My Side of the Story – Part 41

To start at the beginning of the story, click here.

I vividly remember my first shower when I got home. I hadn’t been alone to take a shower in 5 weeks. I was a little nervous. What if I fall? What if I get tired? What if my incision splits open? (Ha, so I didn’t really have that thought exactly, but I didn’t like touching my incision. It gave me the hebejeebies!)

I had a shower stool in the shower, so really, tiring and falling wasn’t a true concern. As long as I was smart and sat down when I needed to, I’d be fine.

I really think I used the stool my first few showers than never again. While at home, going up and down stairs and doing all the care for my person, I built up stamina quickly.

Nevertheless, the first shower is unnerving.

Dan sat on the bed in our room and waited for me. He’d have been at my side in an instant if anything were to go wrong. I can still picture him sitting there. I wonder how nervous he was. Maybe he knew I could do it, and it was no big deal. It was a big deal to me.

I chose to continue my outpatient therapy at Mary Free Bed. Even though I wouldn’t have any of the same therapists or even the same facilities, there was a level of comfort and trust with the care I had received at MFB. This decision greatly impacted my family though. Dan and I lived in Grand Haven, Michigan at the time, a good 50 minute drive from MFB. My mom and two sibilings were living with us at the time to fill in the gaps of care should Dan need to be at work (I was to be under 24 hour supervision for the first 30 days of going home). So that meant a LOT of driving for my mom.

I don’t know how often I had therapy, at least three times a week, maybe more. So lots and lots of driving.

I had a harder time enjoying my outpatient therapy. On the one hand, the therapists were changing all the time. Their schedules are so full that it takes a while to get enough space in one therapist’s schedule to see the same one consistently. On the other, I was living mostly on my own and I still had therapists tell me I was “slow.” My ego was so big. I still couldn’t handle this.

Don’t they know what I’ve been through? I’ve had OPEN SKULL brain surgery! I’ve had my head cut open, put back together, and LIVED! I learned to walk again, move my arm, fingers, wrist, tongue…they don’t move quite correctly but isn’t that minor??? I’m smart. I work as an actuary. I know math like these therapists have never seen. I can write Excel formulas that can make your eyes swim. I…I…I…

Big ego. I’m not kidding. I thought I was so smart that there was no way I could be slow. I was so wrong.

Speech therapy was still my least favorite and the most likely sessions for me to be told I was slow. My primary therapist got on my nerves, a lot. She loved pop culture quizzes and games. I don’t know pop culture. I don’t know current TV shows, game shows, or music. I might recognize a song, but I’d have no idea who sang it. Thankfully I was with it enough to tell her that I just don’t know pop culture. It’s not that my brain isn’t working; the information just isn’t there. 🙂

So we ended up playing a lot of card games. Again, not my strong suit but better than the “Who sang this song?” quizzes!

I remember my speech therapist releasing me from our sessions. We had already finished our speech session, and I was working with my occupational therapist. She approached us and asked, “How would you like for our sessions to be finished?” I can just imagine my face lit up with pure joy…ha, I feel a little bad looking back at how overjoyed I was to be finished with speech therapy. I don’t know my response exactly, but I was probably overly emphatic about how much I want to be done.

My Side of the Story – Part 39

To start at the beginning of the story, click here.

Discharge from Mary Free Bed

In the days leading up to my discharge from MFB, I focused on walking to all of my therapy sessions (my wheelchair was taken away from me a day or so before discharge, what a feeling!) and getting as many practical daily life tips I could get from my therapists.

We determined that I should have a stool in the shower at least for a while until my stamina had returned more. All it took was one email to our friends and a stool was found for me to borrow. Isn’t God amazing? He knows what we’ll need and provides just the right thing at just the right time. I don’t know too many 25 year olds who can readily locate a shower stool.

I remember doing some formal testing with Ken during our final Occupational Therapy sessions. I don’t remember the results or what exactly they were testing, but I must have passed. 🙂 I had quite a few tips and tricks up my sleeve already for showering myself, getting dressed, moving about the house, and basic cooking. The staff at MFB made sure I did as much as possible myself, but it was a relief to know Dan (or my mom for a short while) would be there to help should I need it.

I had a game plan to continue outpatient therapy in three areas: speech, physical, and occupational. Hmmm, that seems wrong now that I type it. I for sure did speech and occupational as an outpatient, but I’m not 100% sure about physical therapy.

I remember telling people I was in patient therapy for 11 days, so I must have been discharged around December 22, just before Christmas. My goal throughout therapy was just this: to be home for Christmas, and I was. Again, isn’t God good?

DSCN5107_small-400x300

**Picture complements of Lacey Rumley. This is the Rumley Christmas December 25, 2009.**

I don’t remember much from my discharge day, but here’s the snippets I can recall:

  • A “long” walk down the cold hall that connects the MFB building with the parking garage.
  • Dan had pulled our little red car up to the door
  • It was COLD out!
  • He helped me into the passenger seat. It felt so weird to be in a car again!
  • Walking in the front door of my home in Grand Haven. My dad holding my dog, George, back on his leash. George couldn’t give two hoots what anyone was telling him. He wanted to see his mama!!
  • Sitting on the green chair in the living room, petting my dog. All is right with the world.

While not the end of the story, this closes the biggest chapter: hemorrhage to getting home from the hospital. I still had about a month of outpatient therapy to complete before I was back to work and able to be alone (without supervision, just in case something were to happen).

I was able to share my story to my MOPs group in December 2015. The piece I found most shocking as I was preparing to speak is the short timeline. It seemed like an eternity back in 2009, but from the day of my hemorrhage to returning to work and a full life was only 2.5 months. What?! Thursday, November 12, 2009 to February 1, 2010. Such a short period of time and yet crazy to think how much happened in that time period.

Moving on…must finish my story: Some memories then outpatient therapy…

Next: My Side of the Story – Part 40

My Side of the Story – Part 40

To start at the beginning of the story, click here.

I’ve been composing this list over the last few weeks of random snippets of memories from my hopsitalizaiton or time at Mary Free Bed. They are in no particular order, and they likely won’t make sense to anyone but me. But these are the feelings, memories, and things I don’t want to forget.

  1. How I washed my hands in the bathroom sink at MFB. The feeling of cold seeping in through my left, limp hand as it rests against the side of the sink. Using my right to do all the work of washing: lift left hand, place in sink, turn on water, get soap, rub soap on the left hand, lift hand to water to rinse, rub soap off in water, turn off water, grab paper towel, dry left hand dry right hand. My therapists insisted my left do everything as if it functioned normally.
  2. “Losing” my leg (in hospital) and left arm (in MFB) – When there is no sensation and the brain’s wiring is off, the brain can’t “find” parts of the body…panic ensues. Ask me how I know.
  3. Seeing the writing on the walls as I was coming out of my coma. I believe they were prayers for me and other people at the hospital. Possible hallucination, but I think God gives encouragement and strength in ways beyond our imagination. Who am I to say he didn’t open eyes to see his love for me and the love of my friends and family, literally written all over the walls.
  4. Rice krispie treats on the side table from Melissa – Total hallucination! It was the boot for my foot… there were no rice krispie treats, unfortunately.
  5. Dan sleeping with his head on my hospital bed – Night after excruciatingly long night, he watched over me and cared for me, to the point of utter exhaustion. (He would say he wasn’t exhausted. God gave him strength. He had very little sleep those days, 4-6 hours. He was and is my wonderful protector. He is always watching over me and taking care of me.)
  6. Dan washing my hair at MFB, and spraying the water all over my face, which I hated. 🙂
  7. The smell of the soap at MFB and smelling it again at City Flats Restaurant. Funny the things that trigger memories.
  8. Basking in the sunshine in the atrium of MFB for 20 minutes in between therapy sessions.
  9. Cream of wheat for breakfast every morning lovingly sweetened to perfection by my wonderful husband, Dan.
  10. My mom reading the Bible to me in a dimly lit hospital room.
  11. Visitors hesitantly huddled around my hospital bed during the week of my second bleed.
  12. Poster board with messages of hope and healing (and wonderful drawings by my nieces, nephews, and sibilings!) hanging on the wall. I still have this, Lacey! I intend to frame it and hang it in our house someday. It is a powerful reminder of the love and support I had from friends and family through this time.
  13. Peace. Absolute, complete peace. The first few uncertain days were very peaceful for me. Jesus had me wrapped in perfect peace.

That’s all for now…might be more later!

The next part of the story is outpatient therapy and adjusting to life at home.

 

Up next: My Side of the Story – Part 41

My Side of the Story – Part 38

To start at the beginning of the story, click here.

It has been so long since I’ve written, I had to look back at where I ended…what a nice trip down memory lane! There are so many details I would not have been able to recall if I hadn’t written them down. It makes me a little sad I didn’t finish my story then. I will remember even less now! Here goes anyway…

I am in inpatient therapy at Mary Free Bed Rehabilitation Hospital. I covered my physical therapy in the last post. This one will focus on my Occupational Therapy.

Occupational Therapy focuses on fine motor skills (hands, arms, fingers) and works to get you functioning in everyday life to your fullest degree.

These sessions were brutal. Not so much a hit to my ego like speech therapy was, but it was just plain hard physically. My left arm/hand/fingers were the last to regain mobility and required the most focus of my therapy (I am still working on improving my left hand/fingers to this day).

It has been too long for me to recount my experiences chronologically, so I’ll just write little stories about what I remember. This will be even more flow-of-consciousness than my usual writing…enjoy!

Story 1

One of my first sessions, I remember sitting in my wheelchair next to the therapy bed/mat. Dan is right next to me, and my therapist is explaining that he’s going to lift my arm up for me to work on my range of motion.

Side note: my arm is in a straight sling full time when I am out of bed. The shoulder joint is so weakened and the muscles have atrophy so the weight of the arm could easily dislocate my shoulder.

The therapist takes my arm out of the sling and lifts it straight up in front of me, heading towards the ceiling.

I immediately become nauseous. I tell him I’m about to lose it. He quickly lowers my arm and they get me a bucket.

We try a few more times with the same result: me heaving into a bucket. Weird, right?

My therapist isn’t sure exactly what is going on, but he says the brain does crazy things when it has been through trauma. He suggests we use “self talk” to try to re-wire my brain.

Does moving your arm hurt?  No.

Should moving your arm make you nauseous? No.

He would have me repeat phrases like this as we moved my arm in the therapy session, and he had me use them as I went about my day in other sessions and in my room. It was like trying to talk my brain out of being nauseous. It seems funny now and odd to explain, but it worked! The nausea stopped eventually. It would creep back at times when I tried to do a new activity with my fingers or wrist, but now I knew how to deal with it. Isn’t the brain crazy/amazing!?

Story 2

The first activity we focused on was getting the arm, as a whole, to move. We did lots of movements with just arm weight or holding a light rubber ball. It was crazy to me that the range of motion was so limited. I had very little muscle left, so you’d think my arm could move any which ways, but it couldn’t. We set goals for how far my arm should be able to move and Dan and I worked and worked each break in sessions and at night to achieve these goals.

One thing that was new to me, is the focus on diagonal movements. The therapists said we rarely use our arms in a straight up and down motion. Usually there is an angle to our movements. So while we did straight up and down lifts, we did a bunch of cross body exercises.

Also, it is easier for the brain to make pathways if both sides of the body are making the same motion. So as often as I could, I would do any stretch or exercise simultaneously with my left and right arm.

One session I remember vividly was practicing grocery shopping and picking up produce and items off a shelf. MFB had a little grocery store set up complete with produce bins, shelves, grocery baskets, etc. just like a regular grocery store. My first attempts to pick up a piece of fruit (maybe a banana or lemon…not sure) were so disheartening. I remember flopping my arm onto the produce bin (think trying to lift your arm with only your shoulder muscle) then trying with all my might to get my fingers to curl around the fruit and bring it back to my basket.

I think Ken moved us quickly to another activity. I wasn’t ready for this. It was a huge reality check for me though. I had so far to go.

Movement was slowly returning in my arm and wrist, but my fingers were taking a while.

Story 3

Movement in my fingers was not progressing as my therapists had hoped. So one morning they decided to try an electrotherapy. Basically they put a brace on the affect area that has electrodes that touch certain nerves. The race then sends electronic pulses to activate the nerves and make the fingers move.

This scared the bejeezers out of me.

Looking back I sort of understand the fear. It was something I couldn’t control taking control of my body. I didn’t understand fully how it worked or how it could benefit me. Not to say the therapists didn’t explain it, they did. I just couldn’t  see the long term benefit of this therapy.

So as they prepped the machine, wetting the pads, putting the pads on the brace, and fitting my wrist and hand into the brace, my anxiety rose and rose. They knew I was nervous, so they said they’d start the machine on low and go from there.

They slowly ramp it up…

Immediately my fingers twitch and start contracting.

Fear takes over. I think I asked them to stop.

It didn’t hurt. I still didn’t have a lot of sensation in my left hand, so anything I could have felt would have been minimal anyway.

It scared me though. To my core. Maybe it was not having control of my body. I can’t explain it though, but I didn’t like it.

That was the one and only time I had this therapy.

Present day me wishes I had done this therapy more. I do have a lot of functioning now in my left hand, but I have that little bit of regret “What if I had done that therapy more?” I don’t dwell on it. It doesn’t consume me, but I do wonder if I could have progressed more had I been less afraid.

Story 4

Therapy sessions focused partly on functional tasks/movement and partly on more exercise-like movement. The functional tasks were far more interesting and rewarding.

One day, my task was to bake a batch of brownies from a boxed brownie mix. (Of course we would get to enjoy the fruit of my labors once they were baked too!)

My therapist helped me figure out solutions to every step of the process that would enable me to mix and bake the brownies myself. Remember, independence is the MFB goal for every patient.

First up, opening the package. Seems like a no brainer, right? Rip it open. (These were bags of mix actually with a “tear here” type of opening.)

How to you rip open a package with contents that can spill if your left hand can’t hold the bag still?

Holding the bag in my left arm wan’t an option. I’d spill the mix for sure.

Solution: scissors! Stand the bag up on the counter. Hold it steady with my left hand, to the best of my ability but really it was standing on its own. Then cut the top off with my right hand.

Things like this are so simple, but not easily thought of when you have a disability. The therapists were training me how to think of different solutions to everday problems.

Second: pour mix in bowl and add eggs. Since this was therapy, I had to do everything with my left hand, even cracking the eggs. I guarantee there were egg shells in those brownies! 🙂 My sweet family ate them without comment later that night though. My therapist and I laughed over and over at the difficulty of cracking eggs with a disabled hand. I did it though!

Third: mix the brownie batter, about 50 strokes.

I always wondered why the instructions even bothered to tell you how many strokes to do. Do they really think you can’t tell when everything is mixed through? For this therapy session, it gave me a goal. I had to hold an spoon and stir 50 times.

It was exhausting.

I learned another life functioning tip at this point: weighted utensils are easier to hold/use for someone with my type of weakness/lack of sensation. When the signals to and from the brain are weak, it is just easier to feel the object you are holding if it is heavier and larger.

I used a weighted spoon to stir the brownies. It was just a regular spoon that had a foam piece (and something heavy?) taped around the handle. I remember the therapist showing Dan and I how to alter our utensils at home so that I could be more independent in cooking and eating. It is amazing how much easier the weighted spoon was. My therapist made me try both ways (weighted and regular), and I had way more success with the weighted one.

This session was so fun and stands out in my mind to this day. I accomplished a task (yummy treats!) and learned how to modify my kitchen so I could live more fully in the future.

I really regret that I have forgotten this therapist’s name. It was a lady, maybe in her 50’s? Family, do you remember? She was so wonderful to work with, and I remember her beaming at the end of this session.

Now six years out, I can’t remember much more from the occupational therapy sessions. My left hand was the slowest to return to functioning so I focused on these sessions in inpatient and outpatient therapy the most. I think I did occupational therapy twice a day while in inpatient therapy and three times a week…maybe two?…in outpatient therapy. I am so grateful for the functioning that God has returned to my body. The weakness and uncoordination I feel is so minimal compared to where I started: zero movement or feeling on the left side of my body. God is so good.

Next: My Side of the Story – Part 39

My Side of the Story – Part 37

Beware, this is a long post. I’m really trying to finish up my story so I made my topic larger this time. It may have been a bad idea…

To start at the beginning of the story, click here.

 

Physical Therapy at Mary Free Bed

Physical therapy was by far my favorite therapy. At my first session, the therapist asked me what my goal was for this therapy session. Without hesitation, I answered,

“I want to run again.”

The therapist raised her eyebrows a bit. I don’t think many of her patients have that response. “Ok, then that’s our goal. Let’s run!”

First things first though. I had to walk. I practiced with parallel bars a few times. I would walk between the bars with my right hand on the right bar supporting and balancing myself. My left arm was in a straight sling so it just hung at my side. The therapist would walk on my left side, the weaker side, and Dan would walk on my right.  We would inch the length of the bars then turn around and return to the wheelchair.

The wheelchair was always with me when we walked. If we weren’t going in a small area, like the parallel bars, Dan would always push the wheelchair with me so that I could rest at any time. The therapists were very good about monitoring my level of fatigue.

Walk, sit and rest, walk, sit and rest, walk, sit and rest

I graduated from the parallel bars fairly quickly. My leg strength returned much sooner and easier than I expected. The therapist said that muscles that hold body weight, i.e. your legs, return to functioning more quickly than the arms/hands because they don’t support weight.

A part of getting back to running was building my leg muscles. All of my muscles had atrophy, the left side obviously more than the right. I had weakness everywhere that needed to be worked on.

Sometimes during therapy I’d just practice sitting down in a chair and getting back up. This worked on a functional activity that I needed to get better at, I currently I needed assistance standing up, and it worked on building my quad muscles. They were kind of like modified squats.

We walked everywhere in Mary Free Bed, St. Mary’s hospital, and the cancer center. We tried to encounter as many different types of flooring surfaces and obstacles as possible. One session we walked to a ramp that connected two parts of the hospital. We practiced walking up and down the ramp.

It was a strange feeling trying to account for the pull in gravity on my muscles. I notice now when I walk up or down an incline that is feels different than walking on flat ground, but then I felt unbelievable unstable. I felt on the verge of tumbling down the ramp. I wish I could go back and see myself walking down the ramp. Did I look as out of control as I felt?

Most of the time when I walked with a therapist, I was practicing walking independently. However, they are realistic that I might need accommodations if independent walking does not become a reality, so they taught me how to use a cane.

I kept the cane with me at all times so I could practice with Dan if I need to walk anywhere in the evenings. Just in case you were interested, the cane goes on the opposite side of the affected side. In my case, this would be my right side. The cane should “walk” with the affected leg, acting as a support for it. So step forward with right leg then left leg with cane in right hand, right, left/cane, right, left/cane. Got it? Now you are prepared. 🙂

Another challenging activity that would build muscles and work on a functional life activity is walking up and down stairs. Wow, I never knew stairs would be so challenging.

Stairs are tricky due to the fall risk of the patient. I always had to wear a thick belt around my waist that the therapist held on to until she/he was sure I was steady and able to do the activity on my own. Before we could attempt stairs, I needed to have a certain amount of stability and strength. MFB didn’t want me tumbling down the stairs!

I think by the time we attempted stairs, I was walking fairly steadily with a cane. I don’t think I was walking independently quiet yet.

My therapist spent quite a bit of time explaining how we were going to tackle going up my first half flight of stairs.

“You’re going to lead with the non-affect leg. It is stronger and more stable so we want that leg to do most of the work. This goes against most of your other instructions of “Affected Side First.” The reason is we don’t want you to fall. Stairs are tricky and require coordination and strength. Take all precautions until you are confident in your ability to get up and down the steps safely.”

Deep breath. Here we go!

The therapist (I wish I could remember her name! She and another therapist, Ann, alternated with me during the week. They were super. I loved them.) was on my left tightly holding to my belt, and Dan was directly behind to catch me if I fell backwards.

Step up with the right foot.

Bring the left to the same step.

Exhale. I did it! I made it up a step!

I work my way up the 8 or so steps, one at a time, like a toddler. We get to the top, and I know I’m smiling a champion. I feel like I just conquered the greatest feat. I just climbed Mt. Everest! I climbed eight steps. In a row. I’m the queen of the world!

We stop and rest at the top of the landing. The therapist is thrilled. I’m thrilled. I’m sure Dan was too. Did I cry? (Dan?) I’m crying as I write this. I was so happy and proud. I can’t believe I can climb stairs.

I feel good so we decide to try going back down those eight stairs. Going down is hard than up because gravity wants to pull you down, and the leg muscles have to work harder to balance than going up.

The method is the same going down. Strong leg first. Ready?

Step down with the right foot.

Bring the left foot down to the same step.

One by one, we made it down the eight steps.

Yes! I did it! Whew, my first “flight” of stairs is behind me. I can do anything!

Steps were a key piece to me being released from MFB. Dan and I had a two story house at that time, and our bedroom was upstairs. I had to conquer stairs before I could go home. I was on my way!

Many therapy sessions were spent walking and going up and down stairs. I was always pushed to try to go farther, go quicker, more flights of stairs, and eventually the mother of all tests: walking up and down one stair per foot. This is far more difficult than you would imagine. You really have to trust that both legs can handle holding your entire body weight. It took me some time to trust them.  🙂

A few days before I was discharged, it was time. Time for me to try to jog.

Ahhh!!!

I was so nervous when my therapist said we were going to try it. I still had trouble keeping my left foot facing forward when I walked. The toes would turn in towards my right foot, so I was a little nervous I would trip myself. Ha.

We went out to the atrium/main entrance which is a large square with a garden/outside area in the middle. It is tiled which is good for smoothness, but it will hurt if I fall. The only obstacle is the mats near the front door. I needed to be careful to not trip on those.

The therapist says I can just go at my own pace, just try to jog like I remember how to.

Here we go!

I start walking to get in the rhythm of moving. We speed up then I step into a slow jog…

A few steps into it, I realize: I’m doing it! I’m jogging!

The fantastic thing is my left arm naturally bent up and swung as it should, just like my right arm. This was huge. (I’ll go into detail about my arm in another post, but it is far from working properly, even this close to my discharge.)

I made it over the rugs, no problem. I think it did weave and waver a little bit, but Dan and my therapist corrected me quickly so I didn’t fall.

Just like the stairs, this was elating. I ran. I ran. I ran? I ran.

It didn’t matter how slow it was. I was beginning to feel normal. I had tons of hope that I would work out again. I was gaining confidence that I would be able to participate in a race again.

The last day or two on my hospitalization at Mary Free Bed I was walking independently without a cane. I walked to all of my therapies by myself. We took my wheelchair with me as basically a purse. It held all of my stuff, and it was there just in case I needed a rest.

I think the last full day of therapies, my occupational therapist came up to Dan and I as we were waiting in line for therapy to start. He smiled as he walked up. He said, “I don’t think you need that anymore.” He took that wheelchair away.

Freedom!

I wasn’t sure I was ready to give up my crutch. I knew I always had the wheelchair to fall back on if I needed it. Since someone else had the confidence that I didn’t need it was all the encouragement I needed.

I was free. Free from the wheelchair. I was free to walk on my own again.

This is what Mary Free Bed is all about: restoring freedom to their patient’s lives. I experienced joy and a feeling of great freedom as that wheelchair was rolled away. I was well on my way to recovery.

Next: My Side of the Story – Part 38

My Side of the Story – Part 36

To start at the beginning of the story, click here.

Date Night

While at Mary Free Bed, I was given three meals a day. I use “given” oh so loosely. I paid for them. 🙂 But if a patient missed a meal for any reason, he or she was given vouchers to the main hospital cafeteria for the amount of the meal missed.

On one of the weekends, my father-in-law brought the family and me pizza. We had a little pizza party in the guest suites were my parents were staying. Mmmm…greasy pizza has never tasted so good!

When I got back to my room, I found the vouchers there so Dan and I decided to go check out what the cafeteria had in the way of dessert.

It was exhilarating.

Why?

Freedom.

I was able to wheel myself (although probably Dan pushed me) through the cafeteria and CHOOSE anything I wanted to eat.

I only had so much money in the vouchers so we had to add things up as we went to make sure we didn’t go over the vouchers.

Choices.

Decisions.

Real life!

It was glorious.

Do you know what the best part was?

Sitting with the love of my life in the cafeteria enjoying some frozen confectionery treat. It was like we were dating again.

We weren’t in a rush. There were no other obligations we had to think about. We just sat across from each other enjoying our treats and each other’s company.

We ended up having this opportunity one more time before I was discharged, and it was just as special that time too.

Another nightly tradition Dan and I had was watching a movie every night. Partly this started as just something to do, but I think it was also to distract me so that I would stay up later. I was in the habit of being sound asleep between 6 and 7pm and sleeping until 7 or 7:30 the next day. Yikes! I needed to work at building my stamina so that I could return to a normal work day. At this point, a “normal” day still seemed so far out of reach.

Thanks so my wonderful friends, I had plenty of chick flicks to choose from! Dan was introduced into the wonderful world of sappy movies. It was awesome.

The Proposal

The Wedding Date

My Best Friend’s Wedding

The Princess Bride

I could go on and on. It was another fun tradition we had. It gave me something to look forward to every night.

It truly is the little things in life that matter the most.

Next: My Side of the Story – Part 37

My Side of the Story – Part 35

To start at the beginning of the story, click here.

A Normal Morning at Mary Free Bed

Dan, my parents and siblings, and I fell into a nice routine during the weekdays at MFB. Well, it was nice for me. I think it was probably exhausting for them. I can definitely speak to the power of a supportive family. Many of my therapists told me that the amount of support a patient gets is a big factor in how much they recover. I had amazing support. Someone, whether it was Dan, my mom, my dad, Elyse, Zach, or even Betsey who came to visit one day, I always had someone in every therapy session with me. God is so good to have surrounded me with such an amazing support group.

Back to the routine.

Dan would wake me up around 7am to start getting ready for the day. My first session was at 9 or 9:30, and I needed to shower, eat breakfast, take my morning meds, and have a visit from the doctor before going to my first session. That is a lot of activities to fit into two hours when you move at half speed and can’t do too much yourself.

First things first, shower and get dressed. Showering was not easy. Dan would wheel me into the shower in my nice wheelchair then help me up and into the shower wheelchair. The shower wheel chair was made of plastic and had extra grippy wheels to stay put on the slick tile.

My left arm/hand was not moving for quite some time so I couldn’t wash completely by myself, and I had a hard time washing my hair. It was a team effort by Dan and I to get myself showered.

He was extremely patient with me. He would remind me how I used to hold a wash cloth or show me how my right hand was scrubbing my head then help me practice with my left hand. It was a painfully slow process just to shower.

I was in quite a bit of danger of slipping and falling while in the bathroom too. I did not feel steady enough to even stand on the wet tile by myself for a long time. Dan had to be very careful getting me through the showering process. I was so glad he was there though instead of a nurse.

Once out of the shower, he would help me get dressed. The help was minimal though as MFB’s main goal is independence. They want every patient dressing, feeding, and cleaning themselves as soon as possible. An occupational therapist came in one morning to give me some pointers on how to get dressed with what they called an “affected side.”

Dan and I still joke when I’m missing the arm in my coat or when I can’t get my hand through a sleeve, “Affected side first!” This was repeated over and over for nearly every activity.

Putting on pants? Affected leg first.

Putting on a shirt? Affected arm first.

Walking up stairs? Affected side first. (not true for walking down stairs though!)

Next: eat breakfast! By this time, my breakfast tray was usually delivered with my morning medication. Dan would help me get the food ready to eat. I fell in love with cream of wheat during this hospital stay so he would open the honey packet and help me squeeze it in the bowl. Sometimes he would prepare it for me all together if I was running late.

One key thing with getting functioning back on my left side was to try to use my arm/hand as normally as possible. When I washed my hands after using the restroom, I would put my dead-fish-of-a-hand into the sink and wash it. When I ate, I would try to double-fist anything I was eating my milk carton, my glass, any finger food should try to be eaten with two hands.

While I worked on eating breakfast, Dan would shower and get ready for the day. This was the best part of having a private room Dan could use my bathroom just like if we were staying in a hotel. It was so convenient!

The doctor would stop by in the morning to test my strength and see how therapy was progressing. From day one, I was begging to get off the heparin shots. He told me when I was walking 50 feet a day, I could stop.

I had a new goal…walking 50 feet!

By this time, Dan and I were usually rushing to the elevator to make it to therapy.

 

Next: My Side of the Story – Part 36

My Side of the Story – Part 33

To start at the beginning of the story, click here.

Therapy at Mary Free Bed

I arrived at Mary Free Bed on a Friday, so my first therapy sessions were held on Saturday and Sunday. While the staff tries to keep therapy going as normal every day of the week, the staff is always different on the weekends and they cannot always offer as many sessions due to lighter staff levels. I am thankful I arrived when I did because I did not have the endurance to last a full day of therapy.

Those first two days, and even most of my first week, I would take mini naps in between sessions and during my lunch break. It was physically and mentally exhausting to not only do activities for an hour but also to communicate and think for an hour. It seems funny even now to think about, but when you are heavily medicated with anti-seizure drugs, have been laying flat on your back for 4 weeks, and have some brain damage to boot it is so difficult to get back in the swing of things.

Ok, maybe it’s not that hard to imagine. I just feel insecure in my ability to describe what I was thinking and feeling.

Normal life takes a lot of energy.

One of my favorite memories of my mini breaks was sitting with Dan by the front entrance to MFB soaking up the winter sun that was shining in through the windows. I would just sit in the sun with my eyes closed relaxing and enjoying the warmth.

I was scheduled for four types of therapy: physical, occupational, speech, and recreational. Basically, I was signed up for everything. I had a long way to go!

For those of you who aren’t familiar with these therapies, let me give a brief explanation of each.

  • Physical therapy – This is to work on large muscle movements: walking, running, climbing stairs, walking backwards/side-to-side, stepping over obstacles, etc.
  • Occupational therapy – This therapy focuses on the upper body and fine motor movement. This was my most challenging area, long term. It is still a struggle today in some ways. The goal of these sessions was to get my left arm/hand/fingers moving and functioning as normally as possible.
  • Speech Therapy – This therapy was not only for verbal speaking but anything related to the brain/head/face working properly. While I could speak, my brain was functioning quite slowly and I had significant slouching in the muscles on the left side of my face. The goal of this therapy was to strengthen the facial muscles and help the brain get back into tip-top shape.
  • Recreational Therapy – This was kind of like playing. The therapist focused on getting me back into activities that I enjoyed. We played the wii (I beat Dan most of the time believe it or not!), put-put golf, and board games. We were even working on a visit from my best pooch, George, before I was discharged. These sessions were lots of fun, if you can imagine.

Next: My Side of the Story – Part 34

My Side of the Story – Part 32

To start from the beginning of the story, click here.

Second Day at MFB

My first full night of sleep without the constant interruption of nurses checking my vitals was not everything I thought it would be.

Do you know what happens to your bladder muscles after have a catheter in for four weeks straight?

They don’t work like they used to.

Shocking, right?

TMI? You might want to skip this post. 🙂

10: 30 – I was wakened to nature calling about an hour and a half after going to bed. I woke Dan up. He jumped out of bed, helped me into my sling (which was supposed to be on at all times if I wasn’t lying down), helped me up and into the wheelchair, and wheeled me quickly into the bathroom. He got me to the toilet in the nick of time.

12:00 – I have to go again. Dan is up in a flash, sling, wheelchair, screeching into the bathroom, relief…

1:30 – Again.

2:30 – Again.

3:30 – Again.

Dan is BEAT by this time, and I am too. Our bodies don’t want to get up again, but I would have wet the bed if we didn’t. It was that urgent EVERY time.

5:00

6:30

At this point, we might as well stay up. My therapy doesn’t start until 9, but we assume it will take me a while to get ready. Does it ever! Even getting such an early start, I barely make it to my 9am session on time. All I did that morning was shower, get dressed and eat breakfast. I didn’t fix my hair. I didn’t put on make-up. I didn’t even have clothes to chose from, so no time was wasted there. It just plain took a long time to figure out how to shower, how to put clothes on, and how to get food into my mouth. I was pretty much ready for a nap, and I hadn’t even started therapy for the day.

One of my first sessions was occupational therapy. She asked me how I was coping so far. I immediately told her about our rough night and how tired I was because I had to get up so many times. She kindly explained that my bladder muscles were weakened from lack of use. It could take up to two weeks to regain full bladder control.

Dan and I were instantly deflated. Two weeks?

I don’t think we could take two more nights of being up ever hour in a half to two hours.

She tried to encourage use with exercises to try then sent us on our way to the next therapy.

Next session: physical therapy. This turned out to be my favorite kind of therapy. This is where I learned to walk/run/work out again!

My therapist was a sweet older lady who actually runs part of the MFB program. She started me out with standing between the parallel bars and trying to walk/shimmy my way between them.

She made a joke about my nursing scrubs that I was wearing.

“Those look really baggy. Are they going to stay up when you stand up?”

I kind of laugh and say they should.

They didn’t.

They fell right down as soon as I stood up. Oops!

Thank goodness I had already lost all sense of modesty back in the hospital. We all had a good chuckle while Dan and the therapist tried to tie my men’s x-large scubs onto my slightly-underweight women’s small/x-small body. 🙂 Good times.

My last therapy of the day was speech therapy. The therapist was just trying to get a baseline for what I could and couldn’t do.

One of the first things she had me do was stick out my tongue.

Stick out my tongue?

I thought about it for a minute.

I don’t know how.

I didn’t have a mirror in front of me yet, so I don’t know what I did. I know my brain had NO idea how to stick out my tongue, so I’m guessing whatever I did looked pretty funny.

She had me do a few things then she brought out a mirror for me to try again when I could see myself.

Wow. I did not know what I looked like. I had not looked in the mirror in four weeks. I was a train wreck. I knew my hair would be dried funny, no make-up would show the bags under my eyes, and the lack of sleep would be working its magic, but I had not anticipated the slouch on the left side of my face.

I don’t know why, but it had never occurred to me that my entire left side of my body was affected. I knew my leg and arm weren’t right, but I didn’t know the left side of my face didn’t move right either.

All of the sudden it made sense why I couldn’t drink the liquid medication at the hospital correctly. I kept trying to toss it all back in my mouth and it kept dripping down my chin. I was so confused. I didn’t understand why Dan wanted me to sip it.

It’s only an ounce. Let me just toss it back and swallow it.

It never worked, and I always laughed it off. How silly that I couldn’t swallow this little bit of liquid. It never dawned on me why I couldn’t keep it in my mouth.

The speech therapist ended the session by giving me some exercises that would strengthen the muscles in the left side of my face. I was to do them three times a day, maybe more, I’m not sure anymore. What I do know is that I was committed to doing them as often as they prescribed. I was going to get better!

Mary Free Bed was shaping up to be a much better place than I had thought the day before. I was exhausted but optimistic after my first day of therapy.

 

Next: My Side of the Story – Part 33

My Side of the Story – Part 31

To start from the beginning of the story, click here.

First Day at MFB

I don’t remember too much from my first day at Mary Free Bed because I was exhausted.

I remember being wheeled around the foyer and to the elevators. As I looked around, it seemed like there was so much going on, so much detail, so many rooms, so many turns, so many floors, how was I going to remember how to get out of here? It didn’t seem possible that I had been able to recall such things with ease just a few weeks before.

When we got up to my room, I had a roommate. Bummer. I had requested a private room. How was this going to work? Would Dan still be able to stay with me?

My roommate was watching TV and didn’t pay too much attention to me as the van driver wheeled me in and stopped me beside the bed.

“Do you need help getting into the bed?” asked the van driver.

“Yes” I answered.

So off she went to find a nurse to help me.

My roommate ignored me.

I got helped into the bed, and Dan and family arrived.

I think various staff arrived then too to do some intake evaluations. My picture was taken to post above my bed (just in case someone tries to swap me out with a phony!), the social worker goes over details with Dan and my folks, the occupational therapist is talking to me…blah, blah, blah…

I nod off to sleep.

I’m not sure how long I sleep, but I’m alone in the room when I wake up. My roommate makes a comment about how I’ll never get better if I sleep all day. I can’t even come up with a response to that. I got out of the hospital today. What should I be doing right now? My brain is so fuzzy though from exhaustion (and medication but I didn’t realize that) that I just ignore her.

I need to go to the bathroom, so I buzz for the nurse. My roommate makes another comment about me not getting myself to the bathroom. I tell her that I cannot walk nor get myself up. I don’t remember her saying much else, so hopefully she got the idea to keep her mouth shut.

The nurse comes to help me to the bathroom. I tell her that my left side is my weak side. She say ok then proceeds to drop me onto the toilet. I land really hard and nearly fall to the floor. I’m shocked; flabbergasted that she didn’t guide me or help me more.

She immediately starts to explain how it is my fault that I fell.

I GOT OUT OF THE HOSPITAL TODAY, PEOPLE. I CANNOT WALK, SIT UP ON MY OWN, OR MOVE MY LEFT ARM/HAND/FINGERS. I CANNOT EVEN GET MY OWN TOILET PAPER. I NEED HELP.

Angry and hurt really doesn’t begin to describe my first feelings about Mary Free Bed after my first few hours there. Looking back I’m not sure where the communication broke down. Was it the hospital’s responsibility to tell them what condition I was in? Was Dan or my parents supposed to fill them in? Had they already done so and were ignored? Was I supposed to tell them? I could barely keep my wits about me to ask for help going to the bathroom. I was in no position to be explaining my physical condition. My brain simply could not put that many logical thoughts together and then verbalize them.

Once back in my bed, Dan came back. I have never been so happy to see his face. I felt utterly alone, helpless, and like a total failure.

Dan gets me in my wheelchair and we go for a walk to familiarize me with the floor. We walk around the common areas, and he points out the different things there are to do. There are soft seating areas with games, TVs, foosball, video games, and toys to play with. He tells me that I can visit with family or whoever out there.

Honestly, it looks like the worst place in the world to me. I didn’t want anyone to see me in the condition I was in. I had just had it reinforced a couple times by the nurse staff and my lovely roommate that I was already far behind in my healing process. Why would I ever want to hang out in these open areas where everyone can see me? I wanted to crawl into a hole and hide.

Dan and I continued our walk around the floor until we reached the end where it was a little bit concealed from the rest of the floor, and I lost it. I started sobbing. Dan had no idea what had happened, and all I could get out between tears and gasping for breath is, “She dropped me!”

I’m tearing up as I write this. My emotional state was so fragile then. I couldn’t handle being a failure. I couldn’t handle the “harsh” treatment I was getting. I didn’t know how I could continue therapy there, which technically hadn’t even started.

Dan held me and promised he wouldn’t let them help me to the bathroom anymore. Just like when he held my head when I was transferred back and forth from my hospital bed to the stretcher chair. He would protect me and help me.

We got back to the room with news that a single room had opened up. Praise the Lord! Goodbye crabby roommate; hello privacy!

Each room, single or double, has its own bathroom. Dan was allowed to stay in my room with me so it was a lot like staying in a hotel. He slept on an air mattress on the floor beside me, and I slept propped up in the hospital bed (there was still a chance for fluid to collect in my lungs which would lead to pneumonia).

Day 1 had come to an end. Dan was super excited to sleep lying down as he had been sleeping upright in a chair for the last four weeks.

Sleep, sweet sleep…

 

Next: My Side of the Story – Part 32