Done and done

Writing the previous blog entry somehow served its purpose and the two weeks have passed in a blur of postmodern parenthood: preschool, elementary school, soccer, tennis, Cub Scouts, magazine sales and general mayhem. I managed to get our church’s preschool Sunday School program started last weekend and then there’s that whole college teaching thing that I barely remember I have to do until Wed. mornings. Wait, it’s now Wed. afternoon and that means I have to teach tonight . . .well, crap. Oh wait, it’s just Rome. I can teach Rome in my sleep and the way this day is going, I may be doing just that.

But it’s done. I went for the MRI at 9 this morning. Half hour in the outer waiting room of the incredibly swanky Neurosurgeon’s office (there are like 5 neurosurgeons that share this place, which works since I don’t think any of them are there more than one day a week). Then I got called into the MRI waiting room, a bare little hallway with a bathroom (thank heavens) and a water cooler, but not even a magazine. And the entire building is subzero. Sat shivering for another half hour before I finally got placed in the machine. I can’t believe I’m saying this, but I think the damn thing has gotten even louder in the last year! RATTA TATTA TATTA. CLACKETY CLACK. Then the technician comes in to inject the contrast dye via IV. Deep breath. I can handle this. Ouch. What the hell is he doing in there? “Do they usually have trouble finding a vein on you? Let me try the other arm.” So he tries the left arm. “Is this where your IV was in the hospital? You have a lot of scar tissue over here.” You do realize that you’re making more scar tissue right now? Dye injected. 8 more minutes of clackety clackety clackety clack. Then it was over and I had to pull my frozen stiff body off the table. Foot drop in full force, I limped back to the waiting room where Matt was waiting with our preschooler, who doesn’t start class until 12:45.

As I limp over to the other side of the waiting room, Matt tells me the school nurse has called and that our middle son felt sick during mass this morning and is in her office. Over the next hour (things do not move quickly in this office), while we were being climbed upon by our 4-year-old who had already burned through the battery on my kindle fire, my husband talked to the school nurse three more times. Our son was sent back to class. Our son was sent back to the nurse. Our son was sent back to class to get his lunch to eat in the nurse’s office to see if that would help his stomach ache. Over and over, my husband explained that we were IN A NEUROSURGEON’S OFFICE and if the child’s limbs were intact and he wasn’t puking on anyone (or even if he was), we couldn’t come get him for at least an hour. Then my cell battery died and we realized Matt’s cell was at home. Awesome.

Finally, at 11:30 I got into Rock Star Neurosurgeon’s office where I got weighed and measured. Hey, I’m up to 108 pounds now. I still look like a freakishly frail old lady, but I’m lot better than I was when I was in Rehab. Then we waited another 15 minutes for the Rock Star himself. By that point my anxiety level was so high over the kid in the nurse’s office and the preschooler who was rapidly going to be late for his school and the impending pick up from school carpool circuit that I do every day that I really didn’t freaking care about the MRI anymore. I just wanted out. I secretly think that is Rock Star’s plan. By the time he walked in, I was halfway out the door. I heard the “everything looks good.” Luckily, he had to re-adjust my shunt since I’d had the MRI and that brought me to my senses long enough to blurt out some of my questions. “Will I have to do this every year?” Yes. “Am I at an increased risk for a second stroke the same way other stroke victims are?” Yes. “Why is my dentist making me take antibiotics when I have a cleaning?” Apparently that answer is complicated as there hasn’t really been much research done with shunts, only other implants, but they can’t hurt, so just keep your dentist happy. Matt asked about plane travel which made me wonder where we are going. Yes, plane travel is fine. There are not magnets powerful enough in airport security to mess with my shunt.

I made my appointment for 2015. Then we drove like a bat out of hell to get home. I packed our preschooler’s stuff and Matt called the elementary school AGAIN. The child was still alive and back in class. We took the preschooler to school and then went to lunch and took a breath for the first time today. Now I have ten minutes to get this posted before the afternoon circuit begins and I have to get ready for work tonight. My husband said “at some point, try to take a minute to absorb the fact that he said everything looked good.” Does he know me at all? I don’t work that way. I’m already onto the next fifteen crises in our path. But for his sake, I will do it. I will stop. For a minute.

Everything looks good.

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MRIPTSD?

Tomorrow is a big day. Like THE big day of the year, medical-wise. Tomorrow is my annual MRI and follow up with the neurosurgeon. I’m not anticipating it to be a big deal, but I teach tomorrow night and will not likely be able to blog, or if I do, it will be a very short report on how things went.

Ok, I’m lying. It is a big deal. In fact, it’s a HUGE deal. I’m a damned emotional train wreck and have been for about five days and, since I am nowhere near my PMS days (made that reference just for you, male readers), this is the ONLY thing I can think of that could be causing it. Why? I didn’t feel like this last year. I didn’t feel like this the year before.  Why am I sitting here crying as I type for no good reason, thankful that my youngest is off at a playdate for another hour and then has preschool? I don’t know. Or maybe I do.

In Sept. of 2012, it was my first follow-up, scheduled 90 days after my release. I was still wearing my AFO (although I think I was about to ditch it), but I guess I was reasonably sure that, since I had only been out of the hospital for 3 months anyway, there wasn’t going to be anything on the MRI. I was still shell shocked from our move across town over Labor Day weekend, so I don’t think I even had time to consider my appointment with Rock Star Neurosurgeon.

I had a follow up last year. I remember it. I remember posting about it on Facebook. Why didn’t it bug me? Maybe it was still too close. Surely, nothing would have changed in a year, right? Also, I was in the middle of some major Facebook drama of my own making and that was taking up a lot of my emotional energy. How do I explain this in a succinct way that will make sense to people who don’t live in Clintonville and/or are not on Facebook? My social media weakness is Facebook Groups and I happen to have moved to a neighborhood that is darn near obsessed with them. If you are on Facebook, type Clintonville into the search feature and take a gander at how many groups come up.  With Facebook Groups comes Facebook drama and I was right in the middle of it last September, torn between my real life friends and a much needed outlet for my pent up dark sense of humor. Because of the way the evil Facebook gods work, everything I was posting in the snark/humor group was being broadcast to all of my friends (including elderly relatives who would rather not see swears and those who disagreed with the group’s existence altogether). Pointless, you say? Stupid, you say? Screwed up priorities, you say? Maybe. Shouldn’t Real Life always take precedence over the virtual world? Maybe.  Anyway, I found a solution in creating a second Facebook account that I only use for that particular group, but I didn’t find the solution until after my follow-up exam last year.  So, at the time of my exam, I was more worried about whether one of my real life friends who had gone Facebook silent on me would acknowledge my post about the exam than I was about the exam itself.

Alright, so maybe that’s completely screwed up, but I think I preferred last year’s cyberdrama-obsessed brain to this year’s reality. I’ve been crying for three days.  I got an email this morning from a preschool mom reminding me to bring snack this week and I told her I brought it last week. She replied that there wasn’t a line on the sign up sheet for last week because it was only a half week, so I must have signed up for this week.  I freaked out and threw a tantrum (in front of my computer only, thank goodness) because I am a giant raw nerve. Then, I went out and bought snack.

I’m having flashbacks again. I haven’t had flashbacks in 18 months. I relive moments in Rehab and from those pre-surgery days (the post-surgery ICU is a blur, as my handful of loyal readers will no doubt remember). If this is your first visit to my blog, you might want to go back and peruse some of the May entries for a peek into my drug-hazed post-brain surgery mind (what there was of it). The Flashbacks darn near crippled me that first year out. PTSD. I feel guilty throwing that term out there. I am not a soldier. I have Facebook friends that are. I have relatives that are soldiers and wives of soldiers. I don’t want to trivialize anything that actual soldiers have gone through, but that’s what it is. And like a soldier’s PTSD, it sneaks back up on me whenever something reminds me. Something like a pending MRI. Remember, it was the MRI that got me here in the first place. Sure, it saved my life. But it royally screwed with it, too. Tomorrow’s MRI comes with an IV to pump dye through my system and then there’s that sound. Clackety clackety clack clack clack.

This weekend I had a flashback memory on autoloop. It wasn’t even a particularly traumatic one, which makes it all the more annoying. It was a conversation with Opare, the male nurse (who I adored).  At night, he would put my left foot in a boot–like a big giant ski boot thing. I hated it. I couldn’t sleep with it. I told him I didn’t want to wear it. “You don’t want to get foot drop,” he said. Like it was preventable. Like the boot would stop it. Like my not wearing the boot would somehow bring it on. Too late. I already had it. Most stroke victims survivors have it to some degree. To borrow a phrase from my mother, I am a thousand percent sure that the damn boot made not one bit of difference in the severity of my foot drop or lack thereof. How do I know this? Facebook Groups, of course. Because now I am part of groups for stroke survivors in addition to my many, many Clintonville groups (at least the ones I haven’t been banned from, but that’s another story). Everyone has foot drop. Some have it so bad that they are still wheelchair bound and always will be. And some are like me, walking, out of the AFO and only hampered by left toes that don’t work and a limp that gets worse in damp cold weather.

I’m sure tomorrow will be fine. Matt is taking the day off to go with me. I am writing down my questions as I always get overwhelmed in the presence of Rock Star Neurosurgeon and can’t remember what I was going to ask. Questions include: is it ok for me to take melatonin since you took out the part of my brain that produces it naturally? Like other stroke victims survivors, am I at a higher risk for a second stroke or does mine somehow not count since it took place during surgery and I don’t have other risk factors like smoking or hormonal birth control?  Why does the dentist insist that I slam a quadruple dose of antibiotics before and after my cleaning since I told him I have a shunt? Will the shunt ever come out? Will I always have an MRI every year? Why has my TMJ switched sides and does it have anything to do with the tube running down my head and neck?

And then there’s the one he can’t answer. How can I know everything will be fine tomorrow and still not know everything will be fine tomorrow?

Except that it’s not tomorrow anymore. Before I had the chance to publish this entry, which I was planning on doing after I got all of the kids home from school, I got a call from the neurosurgeon’s office. My enter-multiple-swear-word-adjectives medical insurance won’t approve the MRI unless the neurosurgeon himself or one of his PAs makes the actual call. I guess no one told United Healthcare that Rock Star Neurosurgeons don’t have time to wade through their bullshit personally. They wouldn’t accept a call from one of the nurses. So we pushed the appointment back to Oct. 1st and, hopefully, the PA will communicate with insurance before then.  I’m publishing this entry anyway in hopes that my angry last paragraph rant will overpower my weepy worries because now I have two more weeks to get through.

On loss

I

I realize that I haven’t written in a while. It’s been a long summer full of kid and family stuff and now we are just settling back into our fall schedule. Most of my readers are my Facebook friends, and I have added about a dozen of you since the last entry I wrote. If this is your first visit here, you might want to go back to the beginning later and read the whole story. I’m going to try to do that myself because I really haven’t read this blog as a whole and I think it will help me get in touch with I still have left to tell and what can remain unsaid.

It is a rainy Sunday and my husband and three boys are watching the Lego Movie on DVD, leaving the desktop (aka: the gateway to Minecraft/pbskids/YouTube videos featuring plastic eggs) open for once. My netbook is currently not working and, although cell phones are wonderful creations, I cannot compose a blog entry on a phone.

This weekend marks two years in our new house. I guess that merits a blog entry on its own, but that’s not what brought me here today. The primary inspiration for this entry is this picture my husband took this morning (notice Duncan the Westie in the background). We were enjoying our last week of a slow, lazy Sunday before our commitments to various church programs force us to attend an earlier mass. Anyway, we slept in and I was late to shower. In trying to figure out what to do with my wet hair, something occured to me. I wonder if it’s long enough for a ponytail? 

This is a thought I’ve had a million times over the past two years. Putting my hair up was second nature to me before all of this happened. As I likely mentioned at least once before, I refused to go with a short “mom cut,” likely I was still resentful of my own mother for forcing me to have short hair for the first ten years of my life.  Instead, I either twisted my wet hair up with a clip or put it in a ponytail. Not sexy, not glamorous, just me. When I woke up bald and stapled after surgery, particularly once I was coherent enough to realize that I was bald and stapled, I tried not to make a big deal about the loss of my hair, but it ate at me. This was even more true once I was released and had to go back out into the world. The loss of my hair, in some ways, was just one more thing. I’d lost the use of my left leg, my left arm and hand, my bladder, so (deep sigh) of course, I lost my hair, too. As chronicled here, the bladder came back before my release. The hand and arm and leg slowly returned, too. The hair would return. I knew it would, but, damn, it took a long time. Hating how I looked compounded the anxiety that became my constant companion, despite the well meaning comments–wow, you look just like Anne Hathaway (no, no I didn’t). Self-conscious doesn’t even begin to describe what feels like to suddenly be dropped into a weak, uncoordinated body that simply no longer obeys your commands, then add in a shaved head. Am I going to drop this tray? Am I going to trip? Am I going to have an anxiety attack and have to flee the store? Does everyone notice how awkward I am? Are they all wondering what is wrong with me? Do they think I have cancer? Do they think I have my hair like this on purpose?

Back to this morning. I wondered if I could put my hair in a ponytail, so I looked for a ponytail holder. In my previous life, these things bred like rabbits and were scattered over every surface of my home, but today I couldn’t find one. I have a vague memory of packing up the old house in August 2012 and, in a rage, throwing each one I found away. I did it again as I unpacked in this house, so this morning, there were none to be found. I was going to give up when I spotted my clip on the dresser. Why was it there? How did the clip survive the angry purge and the move? How did it not get stored away somewhere? Surely, my hair isn’t long enough for the clip. It was. Holy shit. And so my hair is back, mostly, although I have to dye it now. I guess a few gray hairs are still a small price to pay and I’m hardly the only almost-40-year-old out there who dyes her hair.

Another anniversary passed last weekend that I feel compelled to say something about here. August 24th marked thirteen years since the passing of my dad. My dad seemed perfectly healthy at my wedding in July of 2000, yet a few months later, he was diagnosed with aplastic anemia after donating platelets for a friend.  He was treated with an experimental serum which failed, leaving a bone marrow transplant as his only other treatment option. I was not a match and have no blood siblings. My grandfather was still living at the time and neither he nor my aunt were matches either. However, they did find a match for my dad and he and my stepmom traveled from El Paso to Houston for the transplant in June 2001. Dad was in isolation for a month, then he was released as an outpatient and came in every day for treatment. I visited him at M.D. Anderson in Houston at the end of July and he seemed to be recovering. He wore a mask outside the hospital to protect him from germs.

A month later, we got a desperate phone call from my stepmom. Dad was being readmitted. He had a fever and had likely contracted a secondary infection. Within 24 hours, we were told to get on a plane and head for Houston. Matt and I flew down from Toronto. My aunt flew in from California, stopping to collect my 94-year-old grandfather on the way. By the time I saw my dad, he was on life support. We lost him just over 24 hours later. He was 54.

As I marked the anniversary of his passing last weekend, I couldn’t help but wonder, what if? What if Dad had survived? What if Dad had survived and had been there when I got sick? How would that have changed the experience? If Dad had survived, then, presumably, he and my stepmom would have flown out. Would they have come out with everyone else when I was diagnosed and having surgery or would they have waited and come in later on? What if the burden could have been lifted from my mother’s and stepfather’s shoulders and shared with my dad and stepmom? In my mind, this does not play out in a “my dad was never sick” way, but rather a “my dad was sick and survived” way. Dad would have understood what it was like to be drugged to the gills and seeing things that weren’t real. Dad would have understood the isolation and desolation. Dad would have been a great comfort for my mom because, even though they were long divorced, they always remained good friends. Dad and I had the kind of relationship that got deeper and more profound as I got older and this is an experience that, awful as it was, we could have shared. And so, thirteen years after his death and two years after my brush with death, I feel his loss even more keenly than before.

And as long as we are fantasizing about lost ones who we wish had been there in 2012, my mother-in-law comes to mind. I never even met her. Matt’s mom passed away after a long struggle with breast cancer in 1997. I had only just met Matt and didn’t even know him well enough to attend the funeral. I like to think that, at some point during this crisis, she would have grabbed my father-in-law by the collar and dragged him across the Canadian border to Ohio to support her son and to help care for her grandchildren.

And so, I don’t fantasize any longer about what it would have been like if I’d never gotten a brain tumor. That way lies madness and there are too many positive things that resulted from the experience to wish it never happened. Instead, I fantasize about what it would have been like if everyone had been alive and available. What if my mom and stepdad (and grandfather, I suppose) had come for two weeks as they did and then my dad and stepmom had come for two weeks (which would have lined up with my aunt’s visit) and then my in-laws had come for two weeks? What would that have been like? How would that have changed the experience for my husband, my children and myself?

It is a question with no answers because it is a fantasy. My dad is gone. My stepmom did come out immediately after my release and we see her as often as we can. My mother-in-law is also gone and my father-in-law and his wife are who they are.  My husband is a profoundly changed person for having borne so much of this experience on his own even with the support of our family, friends and church community. We forge on.  At least, I can forge on with my hair up.

 

Odds and Ends

So, I want to write a bit of a general post sort of filling in the rest of the Summer of 2012, then I think I will switch to writing on specific topics rather than continuing a chronological story because, continuing any further with this blog means talking about something I live rather than something I lived. I haven’t quite decided how I’m going to approach it yet, but first things first.

My first public appearance after getting out of the hospital came the day after my release when my middle son graduated from Safety Town, a program for soon-to-be-kindergarteners that teaches about police and fire safety. It’s terrible for me to say that I have very little idea how my son had been attending the class for the previous week. Someone took him. Someone picked him up. I attended the graduation in a high school gym. It was my first experience with crowds. I did not enjoy it. I remember the scarf kept slipping off my head and I was self-conscious. But I was there.

The day after that was a Saturday and we took a drive . . .a long drive . . .to Springfield about an hour away . . .to see a puppy. The little bit of a puppy who would be our Duncan was not ready to come home with us and we weren’t ready to bring him, but we wanted to meet him. I’m not sure what the breeders (an older couple) made of me looking so obviously sick with my sunken chest, my head scarf and my leg brace. I think we gave them a very abbreviated version of my story. Then we visited with the little ball of fluff for half an hour. My eldest and youngest were quite taken with him. My middle son was more taken with the pinball machine in their basement.

In early July, I started outpatient Rehab. I don’t have much to say about it. I had only one Speech Therapy meeting. She gave me the go ahead for staying home unattended with the kids. We still used the sitter on the nights Matt taught through July. I can’t say I enjoyed having her in my space and I also remembered from my own days as a babysitter how awkward it was to try and watch the kids with their parents around, but we stayed out of each other’s way. Her name was Maria and she was a sweet thing, but I really just wanted to get back to me and my kids even though I wasn’t quite up to chasing after them for dinner and bedtime by myself those nights.

OT focused on strengthening my left hand and “driving skills” which was apparently showing me a bajillion bizarre line drawings, then breaking them into pieces and turning them different directions and asking me to identify them. Not my favorite thing. My PT focused on my gait. My biggest issue in the eyes of my PT Karen was that I hyperextended my knee. This would cause trouble down the road, she insisted. To be honest, I can deal with a knee replacement in twenty years. I could tell, though, that much of that hyperextension was the result of the AFO. It helped stabilize my foot and ankle, but hindered my knee. So, in late August or early September, I simply stopped wearing the AFO and continued Rehab for my last couple of months without it.  I’ve never gone back to the AFO, although there are times I wish I hadn’t lost it. My foot drop flares and I’ve been told that if I put the AFO back on when it did, it would help. Oh well, losing it was fallout from our other major event.

We had tried to get “back on the wagon” with showing the house, but it had been up for more than 3 months without an offer. That area of Columbus is still depressed real-estate wise and it was looking like we would have to take a loss and bring money to the table if we wanted to sell. We didn’t have the money to do that. In theory, if the house didn’t sell, we were going to stay put for another year, but all of this had just reinforced how much we wanted and needed to be in Clintonville where are church and school community (who was still feeding us on the two nights a week Matt worked) was located. So we did something we had agreed we absolutely wouldn’t do when we first talked about selling (before brain tumors and strokes changed everything). We decided to keep the house and rent it out. We juggled the financing and went FHA instead of traditional, put an offer in on a much less expensive house in Clintonville than what we had been looking at previously and ended up in our current house. We closed at the end of August and moved over Labor Day weekend.

I wish I could say things went smoothly at the old house, but they didn’t. We had originally wanted a property management firm to take care of it, but they weren’t motivated to find a tenant and in the 60 days they slacked off and let it sit vacant while we paid two mortgages, our front door was kicked in and all of our copper was stolen. So, we ended up posting on Craig’s List and finding a tenant who was willing to move within 2 weeks. She signed a 2-year-lease and has worked out great. Managing two properties is not what we planned or wanted, but it will work as long as we need it to.

I did not go back to teaching Fall 2012. Our semester starts in mid-August and I didn’t have clearance to drive yet. My meeting with the neurologist who could give me the go ahead was around Aug. 21st and I believe the kids’ first day of school was the 27th. I was terrified that he would make me take some sort of test. It was bad enough that my license had expired on my birthday in early August, forcing me to renew when bald and braced. I about had a heart attack when I failed the vision exam on the first try. It was my peripheral vision on my left that kept getting me. The BMV didn’t know I had a stroke. They didn’t know I had struggled with left neglect. They let me try again. The second try, I looked up and over my new glasses for half of the exam, realizing that the armbands of the glasses were interfering with my vision. I passed. Phew. Then I had a complete emotional meltdown in the car with Matt. Par for the course.

Anyway, I was afraid the neurologist would make me take some sort of extra test or training, but he simply asked if I’d had any seizures since my release, gave me another prescription for keppra and gave me the ok to start driving. I had a week to get used to driving again before my kids’ started school. Then I had three days, I think, of picking them up (my second son had started K) and driving them before we moved over Labor Day weekend and my pickup time dropped from 15-20 minutes to 2 minutes.

With the move to Clintonville, we re-oriented our entire lives to this side of town. After a couple of months of half-assed attempts to get back into it, we pulled our eldest son out of martial arts. No more Martial Arts Mom. He played soccer through the school and basketball through the Community Center like all of his school friends. If he misses martial arts, he hasn’t said much about it.

So that’s where we were as Fall 2012 began. I want to write about my changing social circle, about my withdrawal (somewhat forced)  from longtime “real life” friends who knew the “old” me and my immersion into the land of Facebook friends and groups where  they can’t see my anxiety and my physical/verbal awkwardness. I will write about how that came back to bite me in the ass and resulted in the creation of an entirely separate secondary Facebook identity. I will write about anxiety attacks and being nearly crippled with fear. I went back to teaching for the Spring Semester of 2013 and I will write about that, too. I will write about the love/hate relationship I have with my handicapped placard. I will write about the nightmare that was potty training a puppy and an obstinate 2-3 year old at the same time. So stay tuned, loyal readers, we aren’t done by a longshot.

 

Discharged

June 21st was a Thursday. My last morning to be woken up at 5:30am by the nursing staff. My last morning to be wheeled to the breakfast room except that I hadn’t been wheeled to the breakfast room for about 5 days. Since I got my AFO, I had been walking. I walked with the nurse or tech by my side, hand at my gait belt. It felt so strange to sit in a regular chair at the table. I almost felt like I would fall out of it since it didn’t have armrests like my wheelchair did. I also didn’t have the strength to move my chair closer or to push it back if I didn’t like how I was positioned, but that was a small price to pay for no more Lovenox!

That last morning, Germaine, the Rehab tech, made a big deal about NOT giving me a menu for the following day. I was given a modified schedule and was told I would have one last session of each therapy while my discharge paperwork was processed. I would also see Dr. R one last time. I think Tracy came to see me first. I had completed my last official session the day before with my lecture, but Tracy and I had one last task to complete. As part of my Speech Therapy, I had been completing “Power of One” forms for hospital employees, including nurses, doctors, therapists and techs. I had filled one out for pretty much every nurse I had on the Rehab floor and a good number of techs as well as my therapists, Dr. R and the Social Worker. My last session with Tracy was simply walking these forms to one of the drop boxes. I don’t know if anyone actually read these forms, but I’m glad I did them anyway.

My last OT and PT sessions were characteristic of the two therapists.  My OT Jenny cautioned me not to do too much and warned me to be careful. She went over the checklist, ensuring that Matt had purchased and set up all of the required equipment. She warned me (again) against getting a pet anytime soon (too late, we were picking the puppy up on July 20th, but I managed not to tell her that). My PT Cheryl, on the other hand, pushed me to do more. She balked when I told her we had rented a wheelchair. “You’ll never use it, ” she said as she tied a pretty scarf on my head.

“What if we go to the zoo? What about the Ohio State Fair?” I asked.

“You can stop and take breaks. You don’t need the wheelchair.” But I was sure that if I didn’t have it, I would need it, so we rented it and put it in the back of the minivan where it sat for a month. Cheryl was right, I never used it. Eventually, the company came to get it.

I had a final meeting with Dr. R. I remember I had one major concern weighing on me. I wanted to talk about “it.” You know. It. The resumption of marital “activities.” “When can we?” I asked.

“Whenever you want.”

“How can we?”

“However it works best. Whatever is comfortable and feels good.”

I told her my cycle was completely off. I hadn’t had a period since the day of my first surgery. She said it would probably take a while to get back to normal with the weight loss and trauma. She asked what our plan was. Oh, here we go. The question. The Birth Control Question. I braced myself the way I always do with any medical professional other than my OB/GYN. “We use the Creighton Method of NFP.”

“Ok, well you’ll need to be careful in your charting until your cycles get back on track.”

That’s it? No head shake? No eye roll? No “what’s your backup method?” No “well, you’ll need a different plan now?” No, “your husband should get a vesectomy?”

Have I mentioned that I love her?

By late morning, I had a stack of paperwork a mile high. The social worker had contacted the outpatient Rehab facility at the YMCA in Gahanna and had even arranged for me to take advantage of the child-care room if I needed it. I also had a stack of prescriptions and a list of follow-up appointments I was supposed to make.  I had a list of instructions including “no driving” and “no being left unattended.” The driving prohibition was until I met with the neurologist, the not being left unattended was unclear. Until I talk to my outpatient therapists? Until I see my GP? Ever?

Finally, about lunch time, there was nothing more to do. Matt was there and I could leave. I can leave. I said my goodbyes. I don’t think Lydia or Amy were on that day. Jourdain wheeled me down with my bag in my lap while Matt got the car. Matt got me loaded into the minivan. We waved goodbye to Jourdain and drove away. 52 days later. We drove away. It was an odd feeling.

I seem to think our kids were split up. The eldest and youngest were in Clintonville, but the middle was on the east side with whoever was dropping him off at Safety Town in Gahanna that week. Getting me discharged had moved quicker than expected, so Matt took me to lunch. What an odd, normal thing to do when you realize you have no children with you. We went to some Chipotle-like place near the hospital. Then we picked boys 1 & 3 and headed across to Gahanna to pick up boy #2 from the school where they were having Safety Town. I stayed in the minivan during all of the kid pickups.  I wasn’t ready to see anyone yet. Also, it took for-freaking-ever to get me in and out of the car. We finally got home late that afternoon. Home.

I only wanted two things: a shower and my bed. I think someone from the church brought us dinner, but I don’t remember it. I remember carefully going upstairs at bedtime to say prayers and tuck the boys in as best as I could. Back then, they actually all went to bed before 8pm! Matt showed me my fancy new shower bench. What a contraption! Two of the legs actually sat outside of the bath and gave me a perch from which to sit and remove my clothes. Then, I very precariously rotated myself forward and scootched little by little into the tub, lifting each leg over the tub rim. In case you’ve gotten the impression, that I was all healed up by my release, let me assure you that this process took like ten minutes. Then I yelled for Matt. He came in and turned on the water and then adjusted the curtain around the legs of the bench (he’d actually had to cut slits in the curtain), so the bathroom floor didn’t get drenched. I had my soap, shampoo and razor (woo hoo!) at hand. Turns out I still didn’t have the mobility to do a good job on my legs and I couldn’t lift my left arm high enough to shave under it, but that also meant no one could see what was growing under there. When I was done, I turned off the water and called for Matt again. He supervised as I got myself to the edge of the bench and gave me a towel. I don’t quite remember how much of my dressing I could do myself at that point, but I was so exhausted that evening, there was zero chance of any of those activities discussed with Dr. R happening that night.

Without my brace, I was supposed to only walk with Matt near me and he took me to bed. It was hard to get situated in a normal bed after all those weeks, but once I did and Matt turned down the lights. I zonked out immediately. I NEVER zonk out immediately. NEVER. I woke up 12 hours later. I NEVER sleep 12 hours without waking. NEVER. I guess being hospitalized for 51 days will take it out of you.

There is more to tell. I will keep blogging as I can: Outpatient Rehab. A puppy. Driving again. Getting my kids back in school. Follow-up MRIs. Anxiety. Moving. Falling into my kindle for six months (or 2 years). Trying to parent a toddler when you can’t pick him up ever again. PTSD. Going back to work. Clintonville. Facebook friends. Facebook enemies.

Thanks for reading this far, everyone. It has meant a lot. Watch Facebook, Twitter or sign up to “follow” for future posts.

 

Field Trips and Lectures

I first heard about the famous Rehab “field trips” during my first week in the ward.  Someone asked me if I was going that week and I stared blankly wondering what I had missed. Then, I started panicking. Those first few days were rough as the deficits got tallied and I’d had more than my fair share of trouble. Did I mess up? Are they not letting me go because I got in trouble? It was only after I met Robyn, the Recretional Therapist, that it was finally explained. Each patient went on one excursion prior to release, normally the same week as their release. Trips took place on Wednesday morning and the ward all but cleared out as most of the therapists attended these excursions, too. There had to be a 1:1 ratio of staff to patients.

I had been part of a special “meeting” on Monday where all of the patients who were going met with Robyn to decide on where to go. They had kind of a standard rotation of places they frequented. They weren’t glamorous or exciting. I remember Billie’s field trip had been to Kroger. My week, we went to Target. They paired each person with one of their therapists depending on their greatest deficit. For instance, if a patient was struggling with cognitive and communication issues, they would be paired with their Speech Therapist. I was paired with Cheryl, my Physical Therapist. I remember someone saying that our group was particularly interesting because there were several of us going without any aids, as in no wheelchair, walker or cane. Bonnie was in my group and I remember we were both terrified of not having the wheelchair with us and were wondering how we would possibly manage to get through a two-hour trip without one.

As we boarded the Riverside Hospital minibus (good leg goes to heaven), I couldn’t help but notice that we were quite a “special” group. There were still quite a few patients in wheelchairs and we all had those bright blue gait belts that you can see in this picture. We were walking with people in bright purple scrubs. As we parked, I remember feeling slightly mortified and wishing that I had a sign to carry that said “I HAVE A PHD, DAMMIT!” But there was no more time to worry about that as I had bigger fish to fry, mainly disembarking from the bus. How do I get down these stairs? Oh yeah, bad leg goes to hell. I clung to the rail and made my to Cheryl waiting for me at the bottom. She put one hand on my gait belt and walked with me into Target.

We had each been given $5 by Robyn and we were supposed to spend it to test our social/math/whatever skills. After making my requisite circuit around the store (look up, eyes ahead!), I bought a Frappucino at the attached Starbucks. It was the best thing I’d consumed in 7 weeks. Those of us who had gathered there chatted amiably as we waited for the rest of the group to finish up. Then we loaded back onto the bus. Good leg goes to heaven. The entire trip was less than two hours. We came back and went into lunch where Bonnie and I regaled Doug and Sheryl with stories of our exploits.

And my day was not over yet. This was my last official day of therapy, although they told me I might have a couple of brief sessions on Thursday morning while my discharge paperwork was processed. My ST Tracy had planned an epic test of my skills for my final Speech session. She wanted me to do a lecture. Standing in front of a white board. With images. When we had first talked about this, I had asked her what topic she wanted me to cover. She chose World War One. Thank you, Downton Abbey and War Horse. Everyone loves WWI now! That was fine with me. I teach World and Western Civ in constant rotation and that is one lecture I enjoy, except that it’s not one lecture. Well, it is in my three-hour night class, but it’s at least two 90-minute sessions or three 50-minute sessions. Tracy, of course, wanted me to cover all of WWI in twenty minutes. With images.

I wasn’t going in completely cold. I had practiced lecturing to Tracy in a couple of previous sessions, but only to her and never standing and not World War One because she wanted me to save that one for my last day. I think I had talked to her about the early Roman Empire one time and the Vikings another time. Anyway, so this was supposed to mimic a real classroom. She set me up in the Breakfast Room after the lunch crowd had left. She tried to fill the audience with therapists. Cheryl was there. Jenny had a session, so couldn’t come. Robyn was there and Tracy was there, of course. They had even hung a whiteboard from one wall and found me some dry erase markers.

I’m always awkward when I start a lecture and this was so much worse than normal. Who knew that standing and talking was so hard? Well, it wasn’t really the standing and talking, it was the standing, talking, glancing at my notes, talking, looking back up at my audience, talking, turning to write on the whiteboard, talking, writing on the whiteboard, talking, looking back down at my notes, talking, etc. Holy crap. This is hard. I never thought I had a physical job, but this is exhausting. Of course, because they weren’t actually zoned-out college students who would rather be someplace else, they started in with the questions immediately. At some point, it kicked in that this wasn’t a real class. There wasn’t any test I had to prepare them for. It was ok for us to be off track, it’s not like I was really going to teach them anything in 20 minutes. We still ran at least ten minutes over. And, true to real life “on the outside,” we couldn’t get the images to work. As I finished, Tracy hugged and congratulated me and escorted me back to my room before running off to her next appointment.

I lay there like a slug until bedtime. I think Matt came by after teaching that night to touch base since I was being released the next day. “Who knew being a professor was such hard labor?” I asked him. Two years later, I still ponder this. I still feel stilted and awkward when I lecture and wonder if I will ever get back that easy fluidity I had prior to my stroke.

It had been quite the final day of Rehab. Funny thing, about 18 months ago, I was at Target. We had moved to Clintonville by then. My youngest was being watched by a friend, so that I could volunteer during my middle son’s Kindergarten lunch as I did two Wednesdays a month. I had dropped him off early, so that I would have time for a quick Target run. I vaguely noticed a white minibus in the parking lot as I entered. Within a few minutes, I saw the telltale blue gait belts and the purple-clad therapists. They were there. The Rehab unit was there. My heart started pounding. Robyin is here! I began to search for her, knowing I didn’t have much time before I had to leave. I also didn’t move very quickly. It was November or December and my limp, which I will forever have, gets worse in the cold and this was prior to my second session of outpatient Rehab. I madly limped around Target looking for Robyn. Finally, I spotted her and limped to her as quickly as I could “Robyn!” I called and she stopped. I’m not sure if she recognized me. I wasn’t bald anymore. “It’s me, Katie. I was Patient Six, six months ago. I had the three little boys.” It took her a minute.

“YES! The professor! You gave that talk about World War One. I LOVED that!” We talked for a minute, but I knew she was busy and I had to get to school. I limped back to my minivan and clambered inside. Then I broke down and started crying. Happy? Sad? Resentful? Overwhelmed? Thankful? Yes.

Home Visit

June 17, 2012 was a Sunday. Since they had pushed my release date back to the 21st, we had asked Dr. R to give me a day pass for the Sunday before. Matt and the boys would pick me up after church in the morning and bring me back to the hospital by shift change at 7:30pm. The nurses dressed me and I think someone even tied a scarf on my head.

I had amassed quite a collection of scarves and head coverings, but I rarely wore them. My PT Cheryl was the only one who could tie it really well. I was hopeless. Even as I began to get the use of my left hand back, it wasn’t strong or coordinated enough for fancy knot-tying. Also, I had this strong aversion to wearing them because I felt like scarves screamed “CANCER” and that was not my battle. I believe I wore one to church when I was first released, but otherwise I mainly wore a hat that my friend Sharleen (at least I think it was Sharleen) sent me from Minnesota. It wasn’t fancy, but it felt more like “me.” Sharleen . . . now there’s a friend I could have used as I tried to readjust to life “on the outside.” I sometimes think that, if Sharleen had still been here, I might have been able to more successfully navigate the mommy-friendship waters.

Anyway, back to June 17th. They had given us a very strict protocol to follow for my day out. Avoid public places as they tend to be overwhelming. I was not to be left unattended. I was to use a wheelchair to get from the car to the house and back again.  We had actually practiced the “car transfer” on Friday with Cheryl and that was definitely the hardest part. Getting out of the wheelchair and levering myself into the vehicle was immensely difficult. It still is two years later, even though I am long out of both the wheelchair and the AFO. If someone sees me park in a handicapped spot and wonders what the heck someone my age is doing with a placard, the question is answered as soon as they see the sideshow that is me entering and exiting my vehicle. During my second round of outpatient Rehab that I underwent a year ago, I worked really hard on this particular skill, but it still ain’t pretty.

With the help of a nurse, Matt got me loaded into the car. Then he got the boys loaded and buckled. Then, we were off. “We have to stop by Wendi’s house first, I have to return her cooler from when she brought us dinner,” Matt said. Errands already? I guess that’s one step back to normality! My friend Cindy had set up an online meal delivery site for me and people were bringing food for us every weekday. As anyone who has been in this position knows, you always end up with an odd assortment of dishes and containers.

Wendi’s house was right in Clintonville, right where we were hoping to move, right between the hospital and our current house. Sigh. This would have been a heck of a lot easier if I had gotten the brain tumor AFTER we moved! We stopped at Wendi’s and she came to the car to say hello. Wendi is the portrait of Scandinavian efficiency. I don’t know her well enough to know whether her ancestors were pioneers, but if they weren’t, they should have been. Wendi doesn’t waste time worrying and brooding, she gets things done. As she was chatting with us, we explained that I was on a day pass and she said “I remember we did that a couple of times with S.” Her son. Holy crap, I know I’ve been out of it for a while, but how did I forget THAT? Wendi had lost her eldest son to leukemia about two years prior to this. I wish I had known her then. I wish we could have offered her family a meal and small comfort during a terrible time like they did for us.

With me now in tears (not a difficult feat either then or now) at the memory of a boy I never met (not unlike the Angel I Never Met), we drove home. Upon seeing the house, the first thing I noticed was the FOR SALE sign. Oh yeah, that. The second thing I noticed was the new paver path Matt had put in right before I went into the hospital. “I think that path and the stairs up to the door are going to be very difficult with the wheelchair. I’ll walk with you instead.” But they said! But they said! We have to use the chair!!!! What if they find out? They’ll put me back in the Swedish belt! I knew he was right, though, so I let him walk me very slowly up to the door and into my house.

My house. I hadn’t been home since that awful morning of May 3rd. I had forgotten the new floors Matt had put in when we prepped the house for market. I very, very carefully made my way up the six stairs to the second floor with Matt by my side. Good leg goes to heaven, bad leg goes to hell. That meant that I was always supposed to ascend the stairs with my right leg first and descend with my left. I made use of my fancy new potty chair (a raised frame with handles that fit over the toilet). I wanted to see my new shower bench, but Matt was still working on that. Then he escorted me back down the stairs. Good leg goes to heaven, bad leg goes to hell. Non-recriprocating pattern. That was a fancy way of saying that I basically stopped with both feet on each stair. I still do stairs this way if I’m tired or carrying something.

My couch. I lay down on the couch.Matt had been sleeping on that couch since I went into the hospital because he didn’t want to sleep in our bed without me. I love that man. The kids bounced off the walls around us. This was not going to be my big chance to “plug back in” with my kids. That would take many weeks, but it was nice to be in their environment instead of my hospital room. I think I fell asleep for a while despite the chaos. Matt called for pizza to be delivered around 5pm since Sunday was a day when we didn’t have anyone bringing us a meal. By 6pm, we knew something was wrong. Matt called again only to discover that we had ordered pick-up instead of delivery. Since I needed to be back by 7:30, we didn’t have time to wait for them to try it again, but the thought of loading all of us into the minivan wasn’t appealing to Matt either. “Just stay  here and I’ll be right back.” But you can’t! They said not to leave me alone!! They’re going to punish me! They won’t release me next week! They’ll take the kids away!

There wasn’t much choice. Matt put a show on for the boys and dashed off to the pizza place. He was home 15 minutes later with all of us still alive. I had been so looking forward to that pizza, but one thing that I’ve struggled with since my 30lbs-in-30-days weight loss is that I can really want something and then not have any interest in eating it. I’m pretty sure that’s what happened that evening because I was worried about getting back to the hospital. I was having visions of the character Brooks from Shawshank Redemption who just couldn’t handle “life on the outside.” Little did I know that I was just getting a sneak peak of the anxiety that would plague me relentlessly for the following year.

Matt took me back. I think we buzzed the nurses station only to wait FOREVER with no one showing up. Typical 7:30pm shift change. Finally, I think Matt unloaded me himself and took me up leaving the three kids in the car under the watch of the security guards patroling the NO PARKING zone we were in. I got back to my room, had Matt escort me to the facilities, so that I didn’t have to page the nurses for a while and sent him off with a quick kiss before someone drove off with our kids. I lay there like a slug for the rest of the night, feeling oddly secure in my hated hospital bed and wondering if I should carve the phrase Brooks was here somewhere in the room.

 

 

 

A terrible idea

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:

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.

Banner Day

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.