This is my 5th and final attempt at writing this post. So much happened during this 4-month period. Depending on my mood, the story changes. Well it doesn’t really change but I seem to approach it from a completely different angle.
I’ll write it one day. Then attempt to review and edit the next day, only to decide that’s not what I wanted to say. Well no matter which direction it takes, this is my final attempt.
Life was truly Hell
Increased bad reaction to medications
Increased tensions at home
Increased physical confidence
DECREASED mental confidence
Emotions off the hook
Tons of Fear
Every minute was different. Every minute was the same.
I thought that going home and receiving intensive outpatient therapy would be the end of the nightmare. Boy was I wrong. All I really did was trade one bitch of a hallway for another inside my nightmare.
Thankfully, during this time, I was extremely busy. If I wasn’t, I believe my bed would have sucked me into the great abyss – never to be seen or heard from again.
Mondays, Wednesdays, and Fridays – I went to “Camp”. Tuesdays & Thursdays – my sister took me to acupuncture, doctors’ appointments and Costco. Weekends I slept and we did the remainder of the shopping.
Fears at Home
Coming home from rehab was unbelievably scary.
I’m not sure which was worse – having to use the bathroom, getting in and out of bed, or bathing (a task that warrants its own post). All tasks that never required a second thought in my past life.
We have a captain’s bed with drawers underneath. The design of our last house wouldn’t accommodate a dresser. Our bed is very high and I need a step to get in it. Back then, I pretty much fell into it and Freddy would push my butt up more and lift my legs onto the bed. Then I would have to maneuver to the middle because I was terrified of being anywhere near the edge.
Why terrified? I really don’t know, it’s not like I was going to fall out. I still couldn’t roll over or even move at all once I was in it. It’s a TempurPedic so it sort of grabs you. Even now, 3 years later, it takes a ton of effort to shift in any way. I still can’t roll over.
It would be close to impossible for me to accidentally fall out. Knowing the low odds hasn’t stopped me. I still feel the need to sleep in the middle even though it’s very exhausting to reach the middle and I have to get out of it 3-5 times a night to pee. I still hold fast to the middle.
Writing this, I finally figured it out. It was the combination of having to use the bathroom once I was in bed that caused the most anxiety! (it still is)
Now the bathroom was a reasonable fear. Balanced sitting was extremely difficult. With no feeling on my left side, I didn’t even know if I was even sitting over the toilet correctly.
My bathroom is very small. The wheelchair barely fit in the room. If I fell while sitting or transferring, I was going to do some damage. There was absolutely no way to avoid crashing into something.
Falling has always been my biggest fear. I endlessly imagined breaking something on my good side. What would I ever be able to do with no hands???? If I felt trapped with half a body, I could only imagine how I’d feel with even less.
I often cried in the bathroom. Actually, to say I cried is putting it lightly. I bawled, I hyperventilated, I melted. Partly because I was so stressed to go in there but mainly because it was the only place I could be alone. I hated falling apart in front of everyone. I did it often enough, so the more I could hide, the better.
My heart totally goes out to those who are locked-in. Although I needed help with what felt like everything. It really wasn’t everything.
• Keep myself occupied with my phone and apps
• Wipe my own butt – Yay! (It was beyond horrible not being able to do that)
• Transfer myself to other chairs (& the toilet)
• Walk, with a cane, the 5 feet to get in the house (overcome with fear, but I did it)
• Wheel myself around the house
• Feed myself
• Talk and be understood (maybe not always heard, but understood)
• Go to “Camp” (interact with other survivors and work on my recovery)
All things that people who are locked-in can’t do.
What is “Camp”?
Neuro Rehabilitation Program = Summer Camp with a twist.
The official description:
“… provides a comprehensive, coordinated continuum of care. This skilled care program is designed to help patients with neurological conditions such as stroke or Parkinson’s disease.
• Audiology/Hearing air services
• Nursing services
• Occupational therapy
• Physical therapy
• Physician services
• Psychological services
• Recreation therapy
• Speech therapy
• Social services
To qualify for the program a patient must:
• Be medically stable
• Have a reasonable expectation for further improvement
• Require a minimum of two therapy disciplines (i.e. physical, occupational or speech therapy)…”
In real people terms……….
Ten recent hospital or rehab escapees (all stroke patients) spending 7 hours on Mondays, Wednesdays, & Fridays kicking ass!
Every hour was a different activity.
Each day we all received an hour of both occupational & physical therapy
Two nurses supervised us “campers” all day. If we had down time, the nurses would answer questions, provide information on various related health issues, play games, or we’d just chat amongst ourselves. Connecting with others just as lost as me had to be the most beneficial aspect.
Mondays we cooked lunch
Mondays & Wednesdays – group psychotherapy
Wednesdays & Fridays – recreational therapy
In-between those we had group occupational & physical therapy.
Group Activities Included:
Magnetic fishing while standing on balance foam
Bowling – plastic pins & ball of course
Beer Pong minus the beer
Wii Soccer and other Wii balance games
Walked the ramp doing various leg movements as we walked up and down holding onto the railing
How can anyone deny we were at camp?
Never Say No
Upon entering camp, I had a gait belt, ankle brace, knee brace, and GivMohr sling.
I had decided that the more I used those things the more I would depend on them. One by one, I stopped showing up with them on.
The first to go was the sling. It was awkward, uncomfortable, and wasn’t correcting my subluxation. So away it went into the closet never to be seen again.
The knee brace was the next to go. Yes it took much more concentration and focus to take a step. It also hurt like hell when my knee would snap back. I still firmly believed it was doing more harm than good by creating too much dependence on it.
Just like in rehab when they would rig my foot with an ace bandage to help with drop foot. I got tired of wasting time getting wrapped so when I finally asked why they rigged it, I said I’ll lift my foot myself.
Therapy became so much harder but I did it.
The difference this time was the therapists weren’t very happy about it. I made their job harder. My fall risk increased. They had to focus more too.
The last to go was my ankle brace. It was time for new shoes. The brace had stretched my shoe to its limit. A bigger size wasn’t an option. I have always been fanatic about my shoes fitting perfectly. My shoe laces tight. Like a second skin. Having too much space in my toes to compensate for the brace on my ankle made me nuts so the brace had to go.
More work for both of us, again. Oh well, it was my body. I knew it best. Didn’t they work for me?
It took a ton of hard work with “Ankle Amy” but my ankle got stronger and stronger. It stopped rolling as much.
I don’t regret ditching the hardware.
My will do anything attitude made up for my independent thinking and total stubbornness. That is until the word “camp” escaped from my brain through that opening on my face. On many occasions I think wiring my jaw shut would have been more beneficial than the hardware provided.
Talking to other newbies was great. Actually, the best part was interacting with other survivors.
The program was in a building directly in front of the hospital (rehab) I was in. Many people were from the same rehab. Not only did we all have strokes but we also knew the same people. It was never silent; we really connected and motivated each other.
I was with a variety of amazing people during the 4 months I was there. Everyone stayed for different periods of time. The average stay was 4-6 weeks. People would change periodically, some coming, some leaving, but almost always 10.
Once again, I overstayed my welcome and became one of the longest “campers”. One young Asian (20 yr old) girl was there for 6 months. She was there when I started. It was sad; she was unbelievably driven, but didn’t talk to anyone.
She had an interpreter because the stroke removed English from her brain. Actually, it just hid it. I talked to her anyways, whether she liked it or not. If you haven’t noticed from my previous posts, I tend to ramble. I also like getting to know everyone.
Once she realized I wasn’t going to stop, she began talking a bit through her interpreter. Then some on her own. She knew way more than she thought she did.
She was having what I call stroke brain. I’m sure there’s a real name for it but I don’t know it. I’m not too interested in terminology.
She would be speaking and unable to find a word so she thought she didn’t know English.
Hell, I ONLY speak English and I was constantly at a loss for words. I described more words than I spoke.
I’d say, “can you go close the ………………………………………..
You know.… (as I point in the direction), that thing we walk through to get in the house. You turn a knob……. “
A damn door. I couldn’t remember the word for door and many other simple words.
Rae and I had a great time cooking. We sat at the end of the table; always laughing, dropping stuff, making a mess. I’m so glad I reached out to her. We were all really sad to see her go. She was very motivating and fun.
Our home base was a big square table. Right after I sat at the table on my first day. This man said that he was shocked to see me and that I looked great. Huh? Do I know you?
Apparently, he was at the end of his rehab stay when I was admitted. He only saw me in the mush chair when I was a vegetable with an attitude.
We quickly bonded. Unfortunately, before we could exchange phone numbers, he left suddenly. There were a few that left without notice. I don’t think I will ever forget any of them.
I’ve never bonded with a group of people the way I did with them. Even the nurses and therapists.
Again, I have to ask. How can anyone deny this is camp?
We played games, made crafts, laughed and cried a lot, and most importantly, connected deeply.
At first, I shared my “camp” theory only with the other “campers”. They agreed. Therapists, not so much.
We were all making the best of a shitty situation. We had one “counselor” that played along with us. She would come to group and enthusiastically say “alrighty campers, today we’re going to play…”
The others felt it belittled their education.
I don’t know…………
We all just experienced the worst thing we have ever experienced. Our lives forever changed. Did they think any of us ever really thought about their education? We needed to laugh.
Many patients felt that we were in adult daycare to give our families a break. Being “campers” changed our outlooks. It made us feel like what we were doing was for us and fun.
They were all great therapists. I am forever grateful for their knowledge, but they were slightly uptight in this regard.
Why couldn’t therapy be silly fun?
Another Door Closes
I left a little prematurely, but my time was coming to an end anyways. We were evaluated every 2 weeks to check on our progress. In order to stay we had to make continual progress, no plateaus allowed. Not the program’s fault. If it were up to the therapists, they would keep us until we were as whole as possible or we felt ready to leave.
Insurance rules all decisions. If only those decision makers could live in our shoes, policies would quickly change.
Anyways my views on therapy limits and plateaus are best left for another day.
I left “camp” because I wanted to participate in a 3-month arm study (free therapy, new & different). I had to enroll in the study before I was 6 months post and had to be out of occupational therapy to participate in the study.
I enrolled and the study administrator delayed my entrance for as long as she could, giving me another month at camp. It was a tough choice but with my limited time left, it was the right choice.
It really was a great program. I’m surprised I haven’t heard about more of them. At 3 years post, I think a program like that would probably help me more now than it did then. Yes, I have plateaued many times but I have also progressed that much more after I hit 18 months post-stroke.
A well-organized camp would be very beneficial on a yearly basis. Like a fun stroke refresher course. Outpatient therapy is nowhere near the same as the intensive day program.
I have yet to find anyone who has participated in a program like this. If you have, I’d love to hear about it.
If you’re interested and in the Cleveland area, contact me and I can provide you with more information.
Next up: Insanity Reigns