Perspective…

I’m back to physical therapy…for now. Unless Covid strikes again…

Im so much better at all the stuff I have learned and know, but the fine tuning…holy mess. If I had to walk a straight line tow to heel. Is be arrested for public intoxication, and I’m stone cold sober. That’s what we worked on today, and it was like holy holy I can’t even do this.

That’s such a weird weird feeling. Not being able to do something you never think about, but could normally do - no problem. That disconnect in the brain is scary. Being in a situation where you know what you’re supposed to do, but you just can’t seem to do it - is mentally challenging. You just feel so so so dumb, and can’t seem to get it there. It’s frustrating beyond compare. I’ve never thought about how being handicapped can affect the way you think, the way you see yourself, the way you everything.

I’ve never thought differently about people with a handicap, they were just normal people. Maybe a little different, but just people. Growing up I had an Uncle Danny, he was actually my grams brother, but we just called him Danny. He had Down’s syndrome, but it was never even really a thing. Just Danny. He would stay with my gram and grandad often…always coloring. ALWAYS. I can remember many many times laying on the living room floor and coloring…the statue of spanky off to the left headed into the room that had the piano and dining room. Straight ahead there was a couch right where the kids table would go, and I remember sitting on my nanny Louises knee listening to her stories…she had a ton.

But, I just remember danny as danny. He loved to color and listen to music…he always had headphones on, and he would always smile so big. So I’ve never really thought about it, what it’s like for people that are different.

Enter 2020.

I. Was. A. Mess.

Couldn’t breathe, couldn’t talk, couldn’t eat, my eyes still don’t work, couldn’t move hardly, could not walk at all. Couldn’t even hold myself up in a sitting position. I would literally just fall over. I could not even drink. I could barely move my left hand.

It was like BOOM you are now handicapped. Have a nice day. I went through all the emotions I think. April thought I was asking her to kill me…I simply wanted the pillow over my head because it was so bright. But, she was ready for suffocation. I do remember one day I was so so so so upset. I felt like I was being abandoned to some state hospital, and forgotten. In my hallucinations I hadn’t seen Trey for days and days. He was staying away longer and longer. I knew I was being abandoned. I had a tracheotomy, could barely talk, and I told him and benton to just push me out the window. I didn’t want to be there alone anymore.

Looking back now I was being ridiculous, but at the time I was terrified to death. I just wanted it to all be over. I couldn’t do anything so I was nothing. And just a pain in everyone’s side. I remember Trey begging the nurse to give me some meds. And I told her ‘I’m not swallowing them’ and she said okay…and away I went.

I upset trey badly that day. He thought I had given up. I thought everyone else had given up on me. I was not in a good place. I know after that day though Trey came to see me more… actually he may have come the same amount, but everything was a bit clearer now.

I did not want to be crippled. At all. That’s when I started to be out in the chair (I hated that thing). Trey would coach me and tell me to be really really positive and impress the lady from roper that was coming to see me.

That was it I think. Trey had gotten me an interview or something to go to roper, another hospital. The only Hospital I wanted to be in. This was my ticket out of this state run hell hole. I don’t remember the interview at all. I don’t even know if I met the lady.

All I know is before they’d accept me I had to get a feeding tube, and wait another week or two. I got the peg tube, and all the crap down my nose and throat gone. Life was going to be better. I was going to Brendas hospital.

When Brenda had all her ordeal she was at Roper downtown. I just remembered everyone was so nice, and helpful…they were great. All I wanted was to be in brendas hospital. After I knew I was going there everything changed. I was SO excited to go. I think I woke up and asked is it time yet? And probably every 10 minutes until 4pm I asked. Are they here yet???

At 4pm we left. Me and mr monkey in an ambulance all alone. I kept thinking it was a trick. Maybe I wasn’t going to roper. I didn’t know where I was. And then Trey and missy were there. Thank God. I hadn’t seen Trey all day.

Roper Rehab is where I really fully understood how bad I was. It was embarrassing. They had me in diapers because I couldn’t feel anything in my whole midsection. Ask I didn’t know if I needed to go to the bathroom or not. And I had to go to therapy in a diaper. Mortifying. Everyone was staring at me. Well they were for real. Evaluating me. Talking about me. Talking about my future, talking about goals for rehab. It was overwhelming.

Goal was to get me able to use a walker around the house, but other than that a wheelchair.

Ummm no. They asked me what my goals were.

Fir occupational therapy I wanted to take a shower

Physical therapy I wanted to wall

And drink water.

speech therapy eat, and drink. I figured my speech was alright.

I just wanted out. I had therapy like 4 hours a day. That was it. I was like ummm no. I’ll do extra. Or I’d wheel myself around the floor in circles using my feet. I was constantly moving. I got benton approved to transfer me so I could get off the damn bed without setting off alarms, and to transfer me to the restroom. Y’all do not even know the difference that made. The nurses would stand in the bathroom and watch me. Benton I could yell PRIVACY and he would leave. I wanted to go to the bathroom a lot. Just so I could have privacy. And be ALONE. He was approved for bathroom transfers so that meant I could get a SHOWER everyday. HEAVEN.

Until Angie came one day for assisted daily living unannounced, and I was already In the shower…alone. But I was sitting down. Haha. She walked in and was like WHAT ARE YOU DOING? Ummmm showering?

I got a lecture that day. HOW MANY TIMES HAVE YOU SHOWERED?

….umm everyday? ☺️

HOW DO YOU SHOWER?

….the way you showed me. He transfers me to the shower seat. Then I get ready alone, turn in the water and wash.

YOU DONT STAND UP DO YOU?

Well yeah to wash my back side just like you showed me. Then I sit down. Turn off the water. Benton already put a dry towel in the chair. So I move to the chair and dry myself off.

SHOW ME

uhhh I don’t wanna get Nekkid in cold.

Leave your clothes on show me what you do.

I show her everything, and she’s like WELL. Don’t do that anymore. If the nurses catch you you’ll be restrained.

I had a shower the next morning. And the next. While benton waited at the room door in case anyone came to my room. He was allowed to stand outside the restroom while I used the facilities. So we I never got caught. Thankfully Angie and Katie moved me from red to green. So I had total privileges.

I remember that day so well. As soon as Trey got there I was in therapy. I said wait a minute. and I made him roll all the way back to my room. And he was like WHAT? I had to show him the I was green. I was so damn proud. In my head that meant I could go home. He was happy. He started crying. And crying.

And that’s when he told me that the rehab people wanted to keep me one more week. That I had some so far they thought another week would be really good.

🤨

It was not good. I did not want to stay. And Trey was so so so upset. I thought I was doing something wrong. I thought he was upset with me. He begged me to just stay. That it would be so beneficial for me…he did NOT want me to stay. But he said I had to so that I get as good as possible. He was so upset. I was upset. I was so excited and then everything fell apart. I did not go back to therapy that day. I just laid in my bed, Trey in the chair bed. He held my hand so tightly and just begged me to take every opportunity to get batter. Looking back now I know why he was so upset. He knew that meant a much bigger chance of not seeing me get out of the hospital.

At the the time I had no clue. But, I was going to do everything I could to get out ASAP.

And I did. I knew I had to get out. I knew I had to be independent. I knew I had to make this work.

I knew I was different, I didn’t care. I had to get back to as close to normal as I could.

I was released on a Wednesday. Thursday morning I had a hospital appointment with my new Dr. after that took try home to go to sleep, and I went to ‘work’. My last few days of work. I wanted Trey to see I could do it. I was t going to just sit at home and feel sorry for myself. He was so so so happy that weekend. The three of us went to the movies like we always did, stopped by the store…and came home.

Home was almost like normal. ALMOST. Everytime I’d leave the room they’d yell is everything alright? If I went to the Bathroom they’d stand outside the door…and I would scream PRIVACY.

I started putting Trey to bed every night again. Checking his meds. Making sure everything was alright. I was handicapped, but still the same. I’d cart my stupid walker around, and carry it up stairs. People still stare at me. That’s a weird weird feeling. I ignore it. Because whatever, also I can’t see well, so oh well.

Now I see handicapped people totally different. Maybe they feel the same way I do. Maybe they are trying their absolute hardest. Maybe they are a little bit better than last week. Who know what their story is.

No matter what it is…I’m sure they are working as hard as they can to get to good just like I am. You just get way ahead, and then realize you gotta go back and relearn everything else. Like standing heel to toe, and you realize how far you have come, and how low you were. But, now you know that with time it’ll all come back. I hope

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