Why Am I Here
Bursting eyeballs, exploding brain, melting insides, missing left side, and you want me to do what???
Why was I here, wasn’t a question only in my mind but also in the minds of the nurses and therapists. At the time, the limited beds were in high demand. Their focus was on stroke survivors. How did I manage to get one when I didn’t even know what was going on, couldn’t sit up, was in excruciating pain and very uncooperative. Who the hell evaluated and accepted me into this program?
My left side just didn’t exist. Still no real clue as to what’s happening.
I know Danny came with me but he was just gone. The next thing I remember is hearing this wonderful woman’s voice.
I don’t know what she said, I just know she made me feel that everything was going to be ok. No one has ever made me feel that way before, EVER.
It was days before I even found out what she looked like. She made me feel exactly as I had imagined a mom would. So she became “Mom”, the world’s most comforting nurse.
I didn’t have a mom, just a woman who claimed to be. A self-centered bitch who was NEVER comforting to say the least. She was never a mom to me. Actually, I’ve only talked her once since the stroke.
“Mom” was great! It’s funny cause I don’t think she was really that much older than me. Maybe a couple of years, tops. That didn’t matter. At that point, I was a special needs 2-year-old.
ICE, ICE, ICE, I need ICE
There still wasn’t enough. I kept getting in trouble for removing my oxygen and putting the ice directly on my skin.
Spews acid was the warning sign on my door. Not really, but it should have been.
I was fixated on going home. What was going to happen at home? Who was going to carry me in the house? Take care of me? Change my diapers?
I had no idea. I didn’t care. I just had to get home.
Weeks later I realized, in the deep parts of my brain, home meant this nightmare would be over. A sure sign that my brain was seriously broken.
The therapists came to me for the first week. I wasn’t leaving bed. I’m told that they couldn’t even touch me. I was super sensitive to everything.
Expectations were too high, from both family and therapists. I think that’s part of my extreme focus on going home. I could just be alone with no expectations and no constant call button noises.
Therapy? I couldn’t even sit up. It was the oddest feeling. Nothing’s wrong with my body yet I can’t sit up or even move a toe. My body was just fine, but nothing left of center exists or works.
To think that my broken brain is the reason is just bizarre.
Did you have trouble comprehending that a relatively small signal from your brain could completely erase half your body and paralyze you?
I guess the brain really mystifies me.
Down to Therapy
Week 2 brought with it what I call a mush chair. A high back wheelchair that tilted. It was like a skinny adjustable bed on wheels. I was just mush, hence “mush chair”. Muscles and bones still MIA.
When they first put me in it and tried to dress me, obstinate child emerged. I just wanted to be in a bed in a quiet pitch-black room covered in ice. Too much pain, leave me alone.
The therapists put on my left sock. I took it off with my right foot, repeatedly. It was just reactionary (clothes hurt, touching hurt). I didn’t intentionally do it.
Finally making it down to therapy room. I assigned my 2nd nickname; “Too Sweet”. It was more fitting than I knew at the time.
Head down, eyes closed, I sensed someone sitting next to me. Leaving my room was too overwhelming. All I could think was she smelled too sweet. It was nauseating. She really was too sweet (personality that is) and eventually, too tough. She kicked my ass on many occasions!
Everything was overwhelming. Sight, sound, smell, touch.
I just wanted to go home, sleep in my own bed with my dog and disappear.
The charge nurse, therapists, and doctors met 2x week to review cases and determine jail time. For weeks, I begged each person involved to vote for me to go home. Thankfully and luckily, my wish was never granted.
Not knowing how long I’d be in rehab and wanting to come back when I went home, my brother returned to Florida. He waited until I was settled in and he felt comfortable with my care.
However, he didn’t leave before completing his transformation from younger brother to parent. I have no idea what words he used, I was still very foggy but I knew he was disciplining me for being uncooperative. Like I was intentionally being difficult. Seriously, I couldn’t hold a thought long enough to do anything intentionally. Whatever he said left me with an intense feeling of needing to stay in rehab.
Maybe it’s what he said or maybe my brain was starting to heal but I started to wake up.
I still begged to go home before each meeting, but I was able to start real therapy with my 500 lb concrete pylon for a leg.
Therapy was 2x a day for 90 minutes. 45 mins PT then 45 OT, Lunch, repeat.
Not a day went by without someone from my family visiting. They were amazing. Freddy brought me dinner every single night I was there.
It was common for me to bring a guest to therapy, not the entire 3 hours but for parts of it. My therapists met everyone. Even my young nieces got to know my therapists and helped me when they could.
For weeks, I had dual therapists. It took 2 people to help me move. They would pull my foot up with an ace bandage. Then one would support my right side while the other would sit on a rolling stool, lift the pylon and move it forward. No need for them to exercise on their own time, working with me was an intense workout.
The good thing about being the most damaged patient in rehab is you get the best therapists, nurses, and aids. I had the best. I had the ones with the most patience that went above and beyond every day no matter how hard it made their day.
Bring It On
Fast forward a couple of weeks, I’m looking forward to therapy and trying to get more. I would go down early to see if someone has time to strap me on the NuStep. They attached my foot and hand with ace bandages (who knew ace bandages did more than support a sprain?). I would pedal until my body stopped or my therapist was ready for me.
On Sundays, only one OT and PT would come in to work with patients whose joints had to be moved every day. Freddy would wheel me down to the therapy room and I would beg them to work with me, and they did.
They were amazing! “Queen”, a Sunday regular, would challenge me in unbelievable ways. Freddy was there to assist, harass and push me if necessary.
The absolute best Sunday was about 6 weeks into my prison sentence when my “Sunday Saints” allowed Freddy to sneak Bones into the therapy room to visit. I got to sit on a therapy table with her and cuddle. It was Awesome!
They will never know how much their time on Sundays meant to me. Not only did they work with me on their own time but I’m sure they risked being disciplined by doing it. They were extremely enthusiastic and their optimism contagious. I am forever grateful.
Eventually I discovered that patients refuse therapy. How crazy is that? They just didn’t feel like going. Once I was able to maneuver the wheelchair myself, I would hang around for the 2nd session to see if there was an opening. Many of the therapists would work with me if their patient cancelled.
I think my drive convinced them to spend their downtime working with me. I must confess, I even surprised myself.
I had gone from ALWAYS saying “NO”, (but doing it anyways) to the patient who NEVER says no. It was quite a turnaround.
No longer considering rehab prison, “Parole Board” turned into “My Care Team”. Although still fixated; when meeting time came I was begging them to keep me. Yes, keep me, crazy as it sounds. By then I honestly and deeply knew my best shot at recovery was staying where I was for as long as I could. I was already becoming one of their longest residents; my time was limited.
I had many people fighting to keep me. They knew my only chance at recovery was staying there. One of the doctors actually said that this program was created for people just like me. Who would have thought that the absolute worst prisoner could turn into a model patient?
Being optimistic and motivated to work makes therapists want to work with you. They work harder and more creatively when they know their efforts are making a huge difference and are much appreciated. The harder they work for you, the more motivated you become. It’s an awesome circle of optimism.
They could all see in me the difference their effort made and they kicked ass!
I went from saying no to begging for more. I would try anything and continue until my body or therapist stopped me. With no feeling, I didn’t know when to stop.
I climbed a ladder. Mistake, but attempted it. I was working with someone new to me. So I climbed. She wasn’t aware that I had no feeling. I got up a couple rungs. She said “come down”. I said “Ok, where is my foot? Is on the step? Is it even close to the step? Is it flat?” She kinda panicked but I survived, no damage and many laughs.
Would I agree to do it now? Maybe.
I’d definitely ask if they knew I had no feeling or any sense of my body in space. If they said yes, then I probably would.
Therapists, unlike Doctors, I trust completely when they have the facts. At least the therapists I’ve worked with.
Once the pain stopped and I was able to move about in a regular wheelchair, I couldn’t stay still. I was unable to read or even watch tv. Cable at the hospital must have come from overseas because I couldn’t understand a word.
When I stayed still, alone in my room, I began thinking. I still wasn’t aware that I wouldn’t be myself again but that didn’t stop me from running every horrible scenario I could think of through my mind.
Thinking is another reason Sunday therapy became so important. The extra therapy was great; but the distraction was better. Down time after the stroke was not good for me. Thinking is not good. (It still isn’t)
In order to stay distracted, I rolled and I talked. Thankfully, the stroke was on the right side of my brain and I wasn’t left with aphasia. However, physically, talking was still tough. Left side paralysis meant; throat, mouth, tongue, etc was useless. I could still speak, just quietly with a ton of effort and help finding words. I described more words than I used.
I got to know everyone; all the nurses, janitorial staff, administrative assistants, dietary staff, other patients, even a patient’s family (who brought me thanksgiving dinner). I learned so much about everyone. I think I was living vicariously through them. I’m so glad most people just need an ear and they talk. It helped tremendously to keep my mind off my issues.
I was the only patient who was regularly found in the common areas. No one started their search for me in my room. If they did, they were often disappointed.
I’ve never been good with names but I made it my goal to know everyone’s name. I also gave nicknames to many, which I’ve never done before. Why wouldn’t I choose to focus on something I was good at before the stroke, wouldn’t it be easier than attempting something I sucked at?
I also started swearing. I rarely swore before, especially in front of strangers. Well an occasional shit or bitch, but that was about it. Now ever other word out of my mouth was F*** this or F***ing that. It took my entire stay for my kids to convince Mr. Metro (my OT) that I never used that word before.
I still use it a ton 2.5 years later even when typing. Another, oh well, it is what it is.
I could write an entire book about rehab, being there so long and out of bed from sunrise to sunset. The stories are endless. I was out of my room 90% of the day.
95% of the people were wonderful; kind, patient, helpful, keeping me unrealistically optimistic. Ignorance is bliss, you know.
Don’t get me wrong, I was not completely ignorant, although I wish I were. Thoughts would creep in and I’d burst into tears in the blink of an eye. Rehab was F***ing tough, but I still believed that I would be “me” again with time and hard work.
It would be many more months before I realized that the “me” I remembered, would only be a fading memory. That was the bliss.
Time to Go
The time had come to say goodbye. My care team worked hard to get me into a Neuro Outpatient Program. The program consisted of three 7-hour days of one on one OT, PT and group therapies.
It wasn’t easy for them to arrange. I was supposed to be discharged on Friday but the program didn’t have an opening for the following Monday. Not wanting me to go without therapy for a week and my advocate brother back to fight for me, they kept me for another week until I could get into the program.
Two and a half years later, I may still be in a wheelchair with only one arm but I am fully aware that without the wonderful care and concern of my superheroes (therapists), angels (nurses & aides) and amazing family, I wouldn’t be sitting in front of this computer writing these words.
Two thousand words later and the only “angel” I’ve mentioned is “Mom” even though I had several angels. Also, upon review, I see no mention of Dynamic Deb (my one-sided best friend), my many other super heroes, the touching gift all the therapists gave me, or the 5% not so wonderful nurses and aides. Stories for another day……………………
Still a child but no longer an infant, I’m off to:
Don’t forget to say hello……..