I’m Still Here

 

 Technical difficulties!

Hello

 

We got back a day late and I’m still trying to catch up on e-mail, and handle a dozen situations, one of which being my laptop/communication device won’t hold a charge for more than five minutes! Such is my life; it’s always something.

Here I Am!

 

I have been offline for a week! Technical difficulties. I have over 100 e-mails to go through, and we still have work to do on my technical difficulties (but at least I can get online again!) I’ll get back to my story as soon as I can. I’m leaving for Wisconsin on Friday (10/17). I’ll be gone for six days. Hopefully I’ll have time to write before then. Technology is great, when it works.

Yay For Me!

 

I did it! I did it! I did it!

No, not moving out on my own. I’m talking about Bejeweled. The online game. Remember?

Okay, switch to my current life. I have been playing the online game called Bejeweled. There are ten mastery levels. The first level is 500 points. The fifth level is 300,000 points. Sixth level is 800,000 points. Eighth is 1 million points. Ninth is 1.3 million points. Tenth is 2 million points!

When I started playing, I once died with only 800 points. Two million seemed an utterly insurmountable goal. However, I decided I was going to reach mastery level ten. I was going to get two million points.

I started over and over, getting a little higher point score every time. I spent, I don’t know how many hours, relentlessly pursuing my impossible goal. Yesterday I was on level 39 (mastery level is based on points, you play each grid level, earning points), and I timed myself. Level 39 took five hours!

Today, I’m proud to announce, I reached mastery level ten, with 2,032,360 points!! (hold the applause)

I could have kept playing, but I had met my goal. I don’t need to play anymore. I’m happy.

I have approached my life, especially my post-stroke life, with much the same mindset as I had in playing Bejeweled.

Step 1: identify your goal

Step 2: decide what you need to do to reach the goal

Step 3:  take a deep, mental, breath

Step 4: do what you need to do

Step 5: celebrate when you attain your goal

Step 6: repeat step 1 and continue to step 6

Today I’m on step five! (now you can applaude)

Liberation!

 

Do you remember how I can’t remember the actual act of moving into Independence House? The same goes for moving to on-campus housing, at the university I was attending. This time it’s, one day I’m living at Independence House, and next day I’m living at the university. Must have been horrible experiences that my brain felt it best for me not to remember.

Anyway, let me describe my new abode. The university really did an incredible job of accommodating me. I was put in a dormitory room that was reconfigured to meet my needs. Actually, there were four rooms. Let me explain. You would enter a large living area. To the left was one bedroom, and to the right was another bedroom and bathroom. So, the dormitory unit was a suite. All the suites in the building were configured similarly. The suites were meant to house four students; two in each room. In my case, I had the entire suite to myself. And due to the university’s generosity, I had to pay only $100 a month, for the entire suite!

It gets better.

In the bathroom, the tub-shower was removed and replaced with a large, roll-in shower. Electric door openers were installed on the door of my suite, the door to the dormitory building, the door to the building where I did most of my graduate work, AND the door to my private office. The university poured a wonderful concrete ramp, up to a door of the building I worked in. The carpet was taken out of my office, for my convenience. I was provided with a computer, for my office. Last, but not least, a remote was velcroed to my wheelchair tray that enabled me to open each door.

I was in heaven! I had my own place! I could open doors! I had an office! I had something to do that I loved doing! I was among people; regular people, not “facility people.” I could come and go, as I pleased, once I was up. I was INDEPENDENT!!!

Independence. It’s a wonderful thing.

At that time, I could not imagine having a better place to live. Looking back, I can see that it was not an ideal place to live. Currently, I have a very nice, fairly large, one bedroom apartment that is much more ideal. I love my apartment, but maybe there is something, even better, out there. Who knows?

At any rate, I was pleased, happy, proud and so grateful. I was so very, very glad that the Center had become part of my past I was so unhappy living at the Center.

“I did it,” I was looking at the ceiling as I lay in bed, thinking to my listener, “I got out! I got out! I got out!”

The next seventeen years would be fraught with perils of every sort: physical, intellectual, emotional, spiritual and psychological. In all that time, no matter how terrible, dangerous, hurtful, frustrating, confusing, depressing, disappointing, or physically painful, my life would become, I never, ever, wished I could go back to the Center, to live.

As I smiled joyfully at the ceiling, I was blissfullly unaware of what was to come.

Independence House, Part II

 

I waited to hear from the senator’s office. I figured I’d get, at least, a form letter, acknowledging that they had received my letter. But, I never heard from them. However, within a week, OVR (office of vocational rehabilitation) agreed to fund my trip to a conference in Halifax, Nova Scotia. They rented a van and paid my registration fee.

Sorry to say, I don’t remember much about that trip. But, I saw a moose!

Of course, doctors, nurses, friends and family said my body wouldn’t tolerate sitting for that long. Gads, I’d be sitting in a van, doing nothing strenuous! I sit all day; I was pretty used to sitting.

“Lynn, be reasonable,” my father was lecturing me, again, “anything could happen. Your lung collapsed just a few months ago. You’d be out of the country. Where would you get help?  No one in your condition would take that trip.”

Here’s the thing about not being able to speak. You can’t speak, QUICKLY. There are dozens of responses exploding in your head, but you don’t want to waste time by spelling out everything. I know that I use words that are shortest and fast to get out, or I say nothing. I said nothing that day. But, I thought a lot!

“So, basically you’re saying I should never go anywhere because something might happen. You could happen to be hit by a bus, but that doesn’t stop you from going places.” looking up, I thought to my listener,” you know my father never wants me to leave this facility. He wants me to be here so that if I have a problem, I won’t bother him. It’s been two years and he still hasn’t built a proper ramp into his home. That really hurts me. I would hope that every parent with a disabled son or daughter, would, immediately make his or her home accessible, I mean, make an accessible entrance. I hate those stupid boards. And hasn’t he learned, after almost thirty years, that when he wants me to do one thing, I almost always do the opposite? You know I’d go nuts sitting around all day, every day, until I die, waiting for that thing that MIGHT happen. When is this man going to just let me live the way I want to live?  I’m not stupid, and I’ve been an adult for quite some time now. And have I had the tiniest bit of a problem with my lung, since the surgery? Not one! You know I’d scream if I could. He makes me so angry!”

(It took me half an hour to write the previous paragraph.)

“Don’t you roll your eyes at me!” my father’s voice got louder, and his face was turning red.

“He must have thought I was rollng my eyes when I looked up to talk to you,” and without realizing it, I looked up, again.

“I said, don’t give me that look!” my father sprang up with ferocious speed. I think he wanted to hit me. My father hit me once. He thought I was laughing at him. I was 14, and I wasn’t laughing at him. But he thought I was, and he slapped my face. Of course, I yelled at him.

“I wasn’t laughing at you! Don’t you dare hit me, EVER again!” I slammed my bedroom door in his stunned face.

I think he was stunned that he had slapped me. My parents did not ever hit their children, except for that one time.

That day when my father was lecturing me not to go to Halifax, he really looked like he wanted to slap me. Instead, he stood there, glowering down at me, with his fists clenched, for what seemed like five days. I looked him right in the eye, defiantly, until he turned, and left, slamming the door to my apartment

I’m sure you all know me well enough to know that I went to Halifax. The weather was not great. Can’t remember much of anything else. But, I did see that moose!

Other than the trip to Halifax, nothing terribly memorable happened during my stay in Independence House.

Well, there was one event that scarred me for life.

I was rolling from Independence House, to the Center. It was a beautiful, sunny, summer day. I was very happy, because soon I’d be moving on campus, at my university. I would be out on my own. So, I’m happily rolling down the sidewalk, when IT happened. I guess I was so traumatized that my brain has blocked all memory of that day, except the fact that IT happened.

(drum roll please)

Somehow my wheelchair rolled off the curb, onto a very busy street!

I have no idea how I managed to roll off the curb, without either the wheelchair falling over, or getting hit by a car!

Overwhelming terror and the thudding sound as my wheelchair hit the street, is all I remember. Oh, yes, and the weather and being happy about moving. Otherwise, it’s a big blank.

To this day, I avoid sidewalks, like the plague and I’ll have a panic attack if I have to walk alone on a sidewalk. I am utterly, thoroughly, terrified of falling off a curb. Whenever possible, I’ll roll down a street, rather than a sidewalk. This fear carries over to ramps, stairs, bridges, and anything I could drive my wheelchair off.

Remember me saying earlier, that I hated those boards? Well, my father, who had a PHd in engineering, got two boards about eight inches wide and two inches thick and seven feet long. He would place the boards a few inches apart, over the the three stairs onto his backyard deck and I would power my wheelchair up those boards, while a couple people pushed from behind. The angle was way too steep, I couldn’t see where the boards were or where my wheels were, and there was nothing to hold the boards in place. Can you imagine how totally afraid I was to visit my father’s house?

I hated those boards.

On a more cheerful note, I’d be moving on campus in August! I couldn’t wait!

When I think about it now, I can’t remember ever wondering where I would live, once I had completed my degree. Never occured to me. And no ever asked me, I think. Michelle probably asked me and I probably said I’d cross that bridge when I came to it. My family, doctors and nurses probably thought I’d never get to that bridge.

Rephrasing Bugs Bunny, “they don’t know me vewy well, do they?”

Independence House

 

independence House was next to the Center. It was a three story building. The ground floor was storage. The second floor was a wheelchair accessible apartment. The third floor was an unoccupied apartment.

The door to the wheelchair accessible apartment was on the side off the building, more toward the back of the building. A long ramp began at ground level and ended at the door to the wheelchair accessible apartment. there was an electric door opener on the entry door. Therefore, I could come and go as I pleased. I didn’t actually come and go much, but just knowing that I could, made my life seem…. more significant. I could control a door!

I could control other things too. I had recently received a legbag opener, and a food dispensing system. The legbag opener meant I could empty my legbag, when I pleased. I didn’t have to wait until someone had time to empty it for me. (A legbag is where urine is collected. I have no control over my bladder.) Legbag openers can be bought, commercially. Liquid food dispensers are not on the market. Someone rigged up a  food dispenser for me.

I’ll try to describe the food dispenser. First, it is definitely NOT a pump. (you can not imagine how many medical equipment companies I have argued with, trying to convince them that liquid nutrition is NOT pumped into me!) I had a pole attached to my wheelchair. The pole is what my foodbag is hung from. The top of this slender pole is about two feet above my head. The foodbag tubing runs through a solenoid valve. The end of this tubing is inserted into my stomach tube. There is a button on my wheelchair tray that I push to open and close the valve. When the valve is open, food runs through the tubing and into my stomach. When the valve is closed, the liquid nutrition stops running. Therefore, I can eat when I please, like any average person!

In summation, a could come and go, I could urinate, and I could eat; all, whenever I pleased!

Those little things make life so much more bearable. Having no control over little things makes it feel like you’re not actually living; you’re simply existing, for no particular reason. I think, this is just my opinion, that there are two groups of disabled people. The first turns away from religion, because they blame their god for their condition. The other group turns to religion, because their god gives them the feeling that their lives have purpose. It’s terribly important to have a sense of purpose. At least, it was terribly important to me to feel like my life mattered. I did not want to be warehouse in a facility, until I died. To me, life in a facility is a life with no purpose.

Being able to control simple little things, made me feel like  maybe, just maybe, there’s a reason to be alive. (by the way, I still don’t know what that reason is, but I’m still looking!)

Independence House. It was a large apartment. Size was good. Interior wall color?

Not so much.

“It’s pink!” I typed to Michelle. She was showing me the apartment, about a week before I moved in. My eyes were wide.

“The paint was donated,” I was informed. “don’t let the color scare you. It’s actually a very nice apartment, that is decorated with donations.”

Michelle held the door open and waved me inside.

“The donations must all hatve come from twenty years ago.” I typed and looked around, my eyes getting bigger and bigger. It was a large apartment, but the decor was pretty awful.

“It’s out of date, but you won’t be here for long.” Michelle smiled happily. I think Michelle derived a feeling of accomplishment from me. Me achieving my goal to leave validated her decision to become a social worker. I could tell that she was proud of me. She had really, truly helped someone to make a better life for herself.

“this is the living room.”

You entered into a large room, that somehow felt dark, even though it had a generous sized picture window at the far end. I couldn’t get close enough to look out because a huge, old-fashioned console television sat directly in front of the window. There was a couch, a couple of chairs, lamps and side tables, and vinyl flooring. (side note: carpet and wheelchairs are not friends. It’s much more difficult to move a wheelchair across carpetting; drains the wheelchair battery faster too).

“Follow me,”Michelle  beckoned, as she stepped through a short hallway, into a large kitchen.

Every room was large, to accommodate wheelchair movement. It’s great that the Center had such an apartment, but, realistically , you could never find an apartment that big, in the real world; not on the income off most disabled people.

I followed Michelle into the kitchen. The size of the kitchen could easily have accommodated a table and chairs. however, no table was present.

“Here is your bedroom.” Michelle walked into a good size bedroom, that had two windows, through which, sun poured.

“My room,” I repeated to myself as I gazed, almost in tears, out of sheer joy. “This is MY room. Wow! I’m really moving out of that place!” Inside I was doing the happy dance.

Michelle interupted my cerebral celebration. “there’s another bedroom and a bathroom between the bedrooms.”

I could have cared less; I just wanted to sit, in MY room.

Michelle walked back into the kitchen. “the second bedroom hasn’t been used in years. It’s become a very big closet, where the Center stores,… junk.” I dragged myself out of MY room, to follow Michelle to the bathroom.

“What do you think?” Michelle had pulled the shower curtain to the side. The shower was nothing short of awesome. The center had teeny, tiny shower stalls that just barely fit a shower chair and an attendant. This shower could fit two shower chairs and two attendants. Not that I planned to ask anyone to shower with me, but, I could have.

After examining the bathroom, I bade MY room a sorrowful goodbye, and motored back to the Center.

The following three weeks are absolutely absent from my memory banks. I remember sharing a room with Teresa and, next thing I knew, I woke up in MY room.

I believe that while I was looking for a private attendant, an aide from the Center got me up and put me to bed. Fortunately, I found someone.

I have to “‘fess up.” I have no idea how I got set up to get social security disability income. I have no idea how I was enrolled a state program that pays for attendant care. I have no idea how I was able to find funding for all the equipment I needed, such as, a hospital bed, the legbag opener, the feeding system, foodbags, a shower chair, a portable suction machine, etc. Michelle did everything. I’m sure she explained what she did, and I’m sure I smiled and nodded and didn’t listen to one word. I just did what I was told I had to do to prepare to move.

Once I moved, the semester started at school. How could I afford tuition? Well, my Dad worked there. My tuition was free. How did I afford books and a computer and other school supplies? Michelle hooked me up with a government agency that helps disabled people to prepare for, get, and maintain a job. I have to admit, if it weren’t for this vocational rehabilitation agency, there is absolutely no way I’d be where I am today. I’m sure they have at least $250,000 invested in me. I’m serious! Accessible equipment is incredibly expensive! And, well, the things I wanted to do, throughout my education, were pricey. 

For example, while I was living in Independence House, I decided to go to Halifax, Nova Scotia, to attend a conference with my academic associates.

I was sitting in MY room, typing out a letter when Amy, my first private attendant arrived.

“Hi Lynn. What are you working on? No more biochemistry tapes I hope.” Amy greeted me and slipped off her jacket and tossed it on a chair.

The tapes she referred to were video cassette recordings that I had someone tape of all my biochemistry classes. The vocational rehabilitation agency paid someone to video tape ALL of my classes. The agency even paid for the new, blank video cassettes. What I did was go to class and listen, without taking notes, and then I would watch the tapes at home, and take notes, on my home computer. I would usually be watching a tape when Amy would arrive, in the evening.

“writing letter to state senator,”I slowly typed on my communication device.

“What on earth for?” Amy was stunned.

“vocational rehabilitation agency not sure can fund Nova Scotia, so asking senator to encourage them to fund.” I had already discussed the idea with Amy and she had said she would be happy to go, and care for me. My academic associates had said that if the agency rented a big enough van, we could all drive to the conference together. I had it all planned. I’d use my manual wheelchair, we could fold it up and Amy would sit me in the van and put pillows around me, to keep me from bouncing around and getting hurt.

“almost done. I’ll print. you mail?” I typed in broken English, because it was faster.

“Sure!”Amy answered enthusiastically. She got an envelope, addressed it, and found a stamp, while I proof read the letter. When I was satisfied that there were no typos, I printed the letter, Amy stamped my signature on the letter, folded it, put it in the envelope, and sealed the envelope.

“”it’ll go out in the morning mail!” Amy firmly promised.

You may be wondering what stamp Amy used to stamp my signature. It was a stamper that stamped my signature. What signature?  Denise, in occupational therapy, before I left the Center, lashed a pen to my right hand, which has some gross motor function, and guided my hand, as I scribbled my signature. I was so disappointed. I used to have such nice hand writing. The signature I had just scribbled look like something a five-year-old had written. That sorry excuse for a signature was sent somewhere, and a stamper was made of that signature. Every time I had to sign something, I was so embarrassed.

As promised, the letter  went out in the mail the next day.

I’ll tell what happened, in the next installment of my blog.

The Terrible Thing

 

I have reached “mastery, level eight” on the online game, Bejeweled, with a high score of 1,022,101 points. (I’m getting there; to two million).

I set my mind on something, and it gets done. That mindset has been quite useful, since my stroke. When I had my stroke, I decided I wanted to live on my own. Nothing was going to stop me: not even the terrible thing that happened in November, 1990.

I had explained, in the last installment of my story, that I had just been sent to the big city hospital to be evaluated overnight, to determine if I could sleep through the night with my tracheotomy tube plugged. If I could sleep through the night, the doctors would remove my tracheotomy tube, and let the hole in my neck close.

Before I continue, I need to give you a mini-lecture on tracheotomy use and care. A tracheotomy is done very often, when an 

individual can’t move for a long period of time.Why is lack of movement important? Movement is important because doing things like walking, running, jumping, etcetera, help clear mucus out of our lungs. Immediately after my stroke, I had absolutely no movement, except my eyes. This lack of movement meant that mucus would settle in my lungs and accummulate. I could not cough or clear my throat. Hence, a nurse had to suction out my lungs by sticking a long, thin tube down my tracheotomy tube. She, or he, literally vacuumed out my lungs. Suctioning is not really a fun thing to do, for the suctioner as well as the suctionee. So, if the individual can make it through the night, with the tracheotomy tube plugged, without needing suction, and maintaining blood oxygen levels,  removing the tracheotomy is preferable.

And for vanity reasons, I didn’t want a hole in my neck.

For about a month before my evaluation, I had been producing ever greater amounts of mucus, and it was starting to turn green. (normal mucus is pale yellow. Too much information?) However, I felt fine, and had no fever, so no one was terribly concerned.

We should have been concerned.

I don’t remember most of the following two days. I’m told that during the night, my left lung collapsed and I had a fever of 105. I do remember feeling hot. Do you know what hospitals do when someone has a raging fever? The person is placed on an ice mattress! Trust me, you don’t know what cold is until you have to lay, for hours, on an ice mattress!

I remember doctors trying to get some gadget down my throat, to look into my lungs. I have a very vague memory of being rushed into surgery. And I remember being in the recovery room, my back aching like pins were being stuck in it.

“Lynn,” a doctor stood over me, “can you hear me? Blink twice, slowly, if you can hear me.”

I blinked twice.

“I’m having someone take you back to your room.”

“Back to my room? Where am I? What happened? Why does my back hurt?” I was confused. I couldn’t seem to focus my thoughts. And my back hurt so much.

“hello Lynn,” a pleasantly smiling nurse bent over me, “I’m sure your back hurts a lot. I’m going to get an IV going for you, and put you on a morphine drip.”

Somehow I had gotten back to my room. I felt a pinch on the back of my hand. Then a burning sensation.

“You’ll feel a burning sensation, and then you’ll fall asleep.” the nurse smiled down. “Everything went fine. You’re fine. We’ll just be keeping you in the hospital for a while.”

“I don’t understand, what happened?” Mercifully, I fell asleep.

Next morning, at 6am, I was rudely awoken by someone wanting a blood sample.

(I have to make a comment. A hospital is no place to be if you want to sleep. Every morning, before even light isfiltering through the window curtains, a technician is poking needles in your arms, trying to get blood. Sometimes even during the night.)

A short time later, my Dad came to visit. He looked exhausted and terribly concerned.

“Good morning Lynn. How you feeling kiddo? You have to stop scaring everybody like this.”

He pulled a chair up to my bedside, and sat, leaning forward in a way that made me feel like he expected something to happen.

“I wanted to explain what happened, before the doctors come to see you. I don’t want them to scare you. First, The doctors say you’re fine.”

I looked at my father quizically, I hoped.

He cleared his throat and began, “two nights ago, your left lung collapse. The surgeons, opened up your back, to examine your lung.” he cleared his throat again and looked like he was about to cry.

“Don’t you dare cry! You know how I am with crying. Just say the word ‘cry’ and I’m there.” I tried to look stern.

“The doctors say the inside of your left lung was coated in a substance that was thick and tough, like an orange rind. They had to scrape this substance out of your lung, and for the next three weeks, your lung will be drained, by tubes that are inserted in your back.

He shifted in his chair, and seemed to relax a little.

“The way it was explained to me is that you had, have, a rare bacterial infection that is like one usually found in cows.”

My eyes opened wide. “Cows? You can’t be serious. Cows?”

“I know, it sounds ridiculous. And what is even stranger is the doctors can’t imagine how you were infected.”

“Well listen,” he clapped his legs with his hands and stood up, “I just wanted to let you know. I need to go get some sleep. We’ll be back this afternoon.”

My father was never one for prolonged visits, or sentimentality. He gave a little wave and walked out the door.

“Cows. Unbelievable! Where on earth did I get that?”

For the next three weeks, my lung drained a sickly green fluid. After a week of lying down, the nurses would get me out of bed, into my wheelchair. I had my brother bring me my school books and assignments. I read my biochemistry book over and, to get a well-educated understanding of bacteria and antibiotics. I later, in December, when I returned to school, passed my biochemistry final. Today? Can’t remember a darn thing about bacteria, or antibiotics.

Oh well!

I started this installment of my story by saying that I decide something and it gets done. Well, much against the advice of family, friends, doctors and nurses, in mid-January, I moved out of the Center, and into Independence House. My lung had collapsed just two months before, but that didn’t stop me!

I have a friend who likes to say, “don’t get your knickers in a twist.”

I agree!

I’m Back, Finally; You Can’t Make This Stuff Up

 

I’ve been back from Florida for a week. I’ve just been busy planning and coordinating our next two trips. Believe it or not, we’re driving to Wisconsin, in October, and then driving to Florida, again, just before Christmas.

Are we complete idiots?

Yes, we are, and proud of it!

Are we independently wealthy?

No, we’re not!

How can we afford to travel so much?

I’m not entirely sure, but something always works out.

Before I continue my story, let me tell you about my trip to Florida.

As you may have guessed, Florida is my favorite state. My grandparents moved there when I was seven or eight. Every Christmas, for the next six years my parents (who also must have been complete idiots) would bundle up their three little children, and drive to Florida. Why were we bundled? When the temperature is below 30 and the snow banks are 15 feet tall, one would be wise to bundle up. You see, my family lived at the top of the upper peninsula of Michigan. My grandparents, on the other hand, lived in the very lower end of Florida. That made the trip a twenty-four hour drive.

As unbelievable as it sounds, my parents drove straight through, without stopping for a night somewhere. And they did that drive with three LITTLE children. (I am the oldest.)

My parents had to be crazy, or just plain stupid!

Be that as it may, I have wonderful memories of Florida. My parents drove us kids all over the state. Each Christmas vacation they chose a couple places, in Florida, to let us kids experience all Florida had to offer. We had the absolute best time. Except once. My Dad took us deep sea fishing. I got so agonizingly sea sick that I have never gone near any kind of boat, since!

Of course, us kids loved Disney World the best. We visited Disney World every year. I don’t know how my parents could have afforded it. Have you seen how much Disney World tickets are!? Outrageous!

I should get back to my latest Florida trip.

It was the vacation from hell, and heaven.

The trip was actually my caregiver’s family vacation, and I was not planning to go. Unfortunately, or fortunately, I could find no one to care for me while my caregiver was away. So, she decided to take me with her. Is my caregiver nuts? Probably.

She reserved a timeshare unit (she owns timeshares) in Daytona Beach, on the beach, for most of her family. The resort had no handicap accessible units available. The closest available, handicap accessible unit, was an hour and a half away, in Kissimmee, Florida. She, her youngest son and I stayed in Kissimmee.

There was a slight problem. Her family’s check-in date was Saturday, and ours was Sunday. So, we decided to spend one night in an inexpensive hotel, in Daytona. I booked a hotel online, through one of those online, discount travel services. (If that service doesn’t refund my money soon, I’m going to start telling everyone I can that the accomodations listed by this service are utterly deplorable!)

Anyway, there were two vehicles: my van and a smaller car. Both vehicles were stuffed to the brim. The car carried four guys and one girl. My van carried three females and my caregiver’s little boy. So, basically it was boys versus girls.

The plan was to leave, “at six. If you’re not here by six, we’re leaving,” the boys warned the girls. So, we girls frantically packed and arrived at the boy’s launch pad, at 6:01 pm.

The boys weren’t ready to leave, until 7:00, of course.

We made arrangements to meat at a Dunken Donuts, to get provisions. Somehow, I do not understand how, the girls ended up at WaWa, and the boys went to Seven Eleven!

But we regrouped and finally got underway at 7:30.

We drove through the night, only stopping for gas. The drive was long, and exhausting, but uneventful. We arrived at Daytona at about noon. The “resort” was not what one would visualize a resort to be. But, it was on the beach! So that made it tolerable.

My poor, exhausted caregiver decided that she and her older son would check in at the place I had booked. When they returned, they looked somewhat stunned.

“What’s up?”I queried, with the innocence of a sleepy child.

My caregiver sat down, took a deep breath, and looked me right in the eye. “Lynn,” she began, “I can’t take you to that place! It’s just too horrible. We could not sleep between those sheets.”

She went on to explain that there was only one car in the parking lot, the door was very narrow, the carpet and sheets were stained, and it smelled like cat urine. That motel was one of those sleazy places where people go to for a quicky, somewhere where the unfaithful husband would go because no one he knew would ever be there.

Call me a snob; I couldn’t go there. I’d be afraid.

So, we decided to stay in the tiny little “resort” unit with my caregiver’s family. My caregiver and her little boy slept on the floor.

Next day, Sunday, after 4:00 we would be able to check-in to our resort. The plan was, all nine of us would go to Kissimmee, we’d check-in and then we’d all go out to dinner, around 6:00. Good plan?

Not so much.

I wanted to take some pictures of the Daytona International Speedway. So, the girls did not follow the boys. We left earlier, so that we’d have time to take pictures (by the way, the Speedway is freaking awesome!) We took pictures, and left.

True to form, my direction impaired caregiver took the wrong exit. We were headed north, to Georgia!
By the time we got turned around, it was after six, and Kissimmee was an hour and a half away. We called the boys to reserve somewhere to eat, at 8:00. Fine, they would do that.

We got to Kissimmee at just about 8:00, and we could not for the life of us, figure out the directions to the resort. (I had gotten them from Mapquest.)

We wandered up and down Kissimmee streets, until we were completely frazzled and ready to kill someone; probably each other. We finally got a signal through to the resort, and were talked through getting to the resort.

When we pulled up to the resort, we were too tired, cranky and pissed off to notice how incredibly beautiful the resort was.

My caregiver went to check-in. I sat in a hot van, listening to the horrible music that was coming from the resort. Half an hour later, my caregiver reappeared.

Our room was on the fifth floor of building eighteen.

Have I mentioned that I’m afraid of heights?

In addition, my wheelchair battery had gone dead. My communication device runs off my wheelchair battery. Hence, my communication device started warning us that my communication device was losing charge. The communication device let out an obnoxiously loud beep, every thirty seconds.

I was not a happy camper!

My slowly unraveling caregiver, unpacked everything out of my van, in order to get to me. (I have a rear entry van and everything was packed behind me) She managed to drag my very heavy wheelchair out of my van, and pushed me to the elevator. On the fifth floor, I freaked out and had a panic attack, because all the passageways had railings open to the outside, meaning I could see how high up I was. I cried hysterically. My caregiver lost it. She wasn’t mad at me. She was mad at the resort for putting a handicap unit so high up!

She pushed my wheelchair into our unit, plugged in my wheelchair and called the front desk. She was mad, and insisted that we be moved to a lower unit. My caregiver is the nicest, quiet spoken person alive, until someone she cares about is in danger. Think mother bear with cubs. She verbally wrestled with five people at the front desk, until she finally got a lower unit. She collapsed on the couch, exhausted and angry. Just then, the person who rode with us came out of the bedroom.

“Have you seen this shower? “she asked, “you’d have to build the shower chair inside the shower and then figure out how to toss Lynn into the shower so she lands on the shower chair.”

My caregiver totally flipped. She grabbed the room’s phone, hung-up on the boys, on her cell phone, and lambasted the front desk, with truly awesome fury.

“This is not a handicap unit!” she was livid. “is the new unit a handicap unit? I specifically asked for a roll-in shower. There is no way that I can shower my boss. Do you idiots expect her to not shower for a week? I want you to find a handicap unit, with a roll-in shower, and I want you to do that now. Call me back when you find me what I reserved.” she slammed the phone down. Her cell phone rang. It was the boys.

“We cannot get reservations anywhere, before 10:30.”

It was already 9:30. The boys had an hour and a half drive back to their sad little excuse for a resort.

“Just go eat!”she yelled impatiently. “We still don’t have the right room!”

The on-site phone rang. My caregiver spoke slowly, teeth clenched, her voice in a menacing tone. “I want someone to go to that unit and verify that that room has a roll-in shower. I’m not lugging all our stuff to another room until someone on staff goes to that room and looks at the shower. Do you understand?”

In the end, we finally got the right room. It was beautiful. You could throw a party in its shower!

I drank very much wine, was put to to bed and proceded to to have a lovely vacation.

I was a very happy camper.

vacationing

 

I was just in Atlantic City and tomorrow, August 1, I’m off to Florida. I’ll be back August 11.