in July a possible  House came on the radar .  Both my future housemate and I were summoned to take a look at the house. It was rather a pointless trip.  We did not have a key to the house.  All we were able to do was peer inside through the windows, and that can be hard to do for a couple of people in wheelchairs.  My sister who drove me to the house was able to stand me up so I could peer inside. However, that did not give me a good feel for the house. My gut feeling was that the house was way too small.  It had a huge backyard, though.  We could have had great backyard parties!

A little after the possible house scare, my back started prickling.  I had my personal assistants check my back numerous of times. The best they could come with was that I had some sort of rash. The pain persisted.  Finally it dawned on me at the very same time one of my personal assistants said, “You know you could have Shingles.”

Shingles are brought on by stress.  Huh, the very idea of a life changing event brought on my second bought of Shingles.  Awesome, not!  Luckily it stayed localized to my back, and was a very mild case.  However, I stayed home and away from the mass crowd for a few weeks, because while I could not pass Shingles along,  I could pass the Chickenpox to someone.  I had cabin fever something fierce!

My doctor wrote me a prescription for acyclovir,  an antiviral medication.   It kept the Shingles from spreading across  my body. When I went to pick up the prescription, I was startled to learn I was supposed to take five doses a day.  i have a gag reflex a mile long, and taking 5 doses a day for ten days seemed like climbing Mt.  Everest!   I specifically asked the pharmacist how solvent the pills were.   He assured me I would be able to swallow the pill before it would dissolve  in my mouth. I believed him.

I waited until the next morning to start the medication preferring not to get up twice to take the dreaded pills.   The second the pill hit my mouth, it started melting, quickly turning into a frothy goo that I could neither swallow or spit out very effectively. The First image that ran through my mind was climbing on top of the pharmacy counter and strangling the pharmacist. I am not typically a violent person, but I strongly felt he deserved some sort of punishment!

I still had 49 pills I need to gag down. As luck would have it, just that week I discovered a Crystal Lite drink mix I actually liked, pomegranate. I had my personal assistants dissolve the pills into the drink, and slugged it down as fast as I could.   Totally ruined the only Crystal Lite beverage I will ever drink for life, but I accomplished what I had to.

I suppose it would do my heart good if I went back to the the pharmacist, and explained my experience with the acyclovir.  perhaps it would save someone undue discomfort.

I have a couple of  aversions to taking any type of medicine:

1.  I am afraid of taking any medicine that might be harmful to my body.

And 2.  I have a terrible gag reflex that makes it difficult to swallow medicine.  So much so that quite often it is simply easier to live with the pain.

The spastic side of my CP was kicking into overdrive.  Having no bandage on my finger meant I had to stabilize my left hand, so that I wouldn’t keep banging my finger on things.  My only means of stabilizing my left hand was by using my right hand. I would grab a hold of my left thumb, and let my fingers rest on top of  the back of my right hand. When that position began to ache, I would let go of my thumb and grab my two little fingers, and again rest my fingers on the back of my right hand.  When that hold got tiresome, I would press my left hand flat on my chest, and hold it there with my right hand. Eventually, that position became unbearable, and I would start that whole sequence of positions all over again.

My left arm and hand were behaving like two completely foreign body parts.   Before my unfortunate accident with the keyguard, if I was concentrating on my work  or simply reading, I would find my left arm and hand curled up near my armpit.  I would easily bat it down with my right hand and place  my left hand between my thighs until it relaxed, only then could I go back to what I was doing. However, after the accident, my arm and hand are impossible to relax.   There was just no way to relax the arm;, no matter what tactic i used.

By the end of day three or four,  I relented, and started taking one Ibuprofen at a time. By day six,  I was taking two at a time,  and was enjoying the sweet feel of relief when the ibuprofen kicked in. It was never enough to deaden the pain, but at least I was a little more calmer.

I lost massive amounts of sleep.  I just could not relax no matter what I tried.   Usually if I have trouble sleeping I will physically get out of bed and wander around a bit, or sit on the edge of the bed helps relive some pent up energy, and not even that helped. What I really needed to do was  to stretch out my left arm.  If I succeeded in getting the arm nicely straightened, it folded back  up on itself again once I laid down.  It was very maddening! Most nights I had to  tell myself not  to leave the edge of the bed, because I was so tired I just knew  I would fallen and further injured myself.

It was the hardest thing for me to grasp that in  order to heal, I need to do nothing but relax.  The only way I can fully relax is by watching TV.  So, I watch shows that made me laugh like, 30 Rock, Raising  Hope,  My Name Is Earl, and any show that took my mind off the pain.  Thank goodness I had just purchased a Roku player which allows me to stream Netflix and recent shows on Hulu.  Without that distraction, I don’t know what I would have done, after all laughter is the best medicine!

This past weekend the Portland area was plagued with 90 plus degree weather. Heat and I do not get along, so I made plans to go somewhere with air conditioning.  My place of choice was Barns and  Noble in the mall. I figured we could find somewhere to cop-a-squat and read for a few hours. Turns out, lots of people had that same idea, for there was not many seats available, not that I needed one (I have a seat wherever I go), but I wanted my PA to have somewhere to sit.  It felt like we were in the parking lot  circling around hoping a car to abandon a space.

Finally, we found a table in the cafe.  Which begs me to ask the following question.  If you sit in a cafe, are you obligated to buy a drink or something to eat?  anyway we were not sitting at the table too long before a couple came along and sat at the table next to us. It was obviously a first date, because they were asking questions you  ask when you’re getting to know someone. I was all aglow thinking I could be witnessing a budding relationship?

I caught myself eavesdropping, I figured if by chance I’m unexpectedly asked on a date, I could take some notes from this couple.  However, I didn’t envision what happened next. The man was saying, “I’m in very good shape  for someone in mid-sixties. I would rather  be dead then be stuck in a wheelchair!”  Then he thought better of his comment, and started exaggeratedly looking about him to see if he had offended anyone. I was looking straight at him, and he looked EVERYWHERE but at me.  I felt totally invisible.

He had to have seen me there. I am hardy the kind of person who blends into my surroundings! I understand that everybody has the right to think and feel about things. I’m sure if the man had acknowledged my presence, and said “I’m sorry for my comment.”  I would have came away from the occurrence  with a different attitude.

I’m still trying to guess why he would ignore me. Do you think he was trying to get even for my eavesdropping?

In hindsight, I wish I had dramatically  flung my arm over my forehead and exclaimed, “Oh Lord, please take my soul now, because my life is not worth living from a wheelchair!”  Then collapsed in my wheelchair. Do you think he would have got the jist of my soliloquy?

I had my PA call Urgent Care, to verify that they took my insurance, they did.  Next my PA asked if we could borrow a van from Community Inclusion.  Since it was both the end of the day, and my PA said I had Hurt my finger and needed to have it checked out,  we got the van.  We got to Urgent Care.  Gave them my insurance  info, and was just settling in to fill  out the  paperwork.  We were stopped  about 30 seconds later.   Turns out Urgent Care could not help me because,   I am covered by two insurances.   They said I should go to ER.   As I was exiting the building I exclaimed that it was B S! For once, I hoped they understood my sediments,  because I was in pain, and all I wanted was to be helped!

Fifteen minutes later, we arrived at ER.  I was checked in, ushered into the intake room to the right of the the reception desk, where they got a better idea of what my problem was, and took my vitals.  I dislike having my blood pressure taken.  My CP kicks  into overdrive and makes it sometimes hard to get a clear reading .  Well, my body was exceptionally tweaked out on this day, and before the nurse was satisfied with a reading, my arm must have been squeezed at least five times.   I thought my arm was going to pop  before the ordeal was over.  I was relieved when the cuff finally came off, and I was released  to the waiting room.

Thirty to forty minutes later, I was ushered into an exam room, where I waited another twenty or thirty minutes. At long last, the ER doctor came waltzing in. Of course, he took one look at my finger and said he wanted three x-rays taken. I groaned. a flashback into childhood, and being taped down to the x-ray table to help me stay still set me farther on edge.  As tensed as my left arm and hand were, getting decent e-rays would be a pain in the rear!

I wished my sister was with me. She’s the only person that knows how to get me to relax. What’s more, she knows how to get my wrist to relax. The x-ray experience would have been a snap if she were there.

Twenty  or thirty  minutes later, the x-ray technician came to escort me to his domain. After my communication device was removed from my power chair, and a lead apron was added to my attire;  the x-ray dude tried to place my left hand on the  exposure table. My hand was curled up in my wrist, and when my finger hit the table a jolt of pain shot through it.

He told me to extend my wrist. My PA explained that would not be possible.  it was like he didn’t hear or understood her, for he kept on asking me to extend my wrist. It reminded me of the times when my dad told me repeatedly to relax.  I would swear each time he said relax his eyes grew larger as if he could will my body into submission, which irritated me to no end!

Finally I felt like I had to show the dude that I understood him. I extended my right wrist. His eyes grew large with hope, and he asked me if that was the hand that my injured finger was on. I said no in as flat of a tone as I could muster. However, I am sure my eyes were flashing fire.  (I have been told on occasion that my eyes can shoot off a number of evil looks. I guess it’s a family trait I am blessed with).

Funny, x-ray dude became creative after that.   He found a foam wedge to rest my hand on.  As my PA was stabilizing my arm with just a touch of her hand, and while I was taking deep breaths, x-ray was happily doing his job.  unfortunately, he could not get a clear image of the tip of my finger,     which at times hurts more then the knuckle. X-ray dude walked us back to the exam room.

Another Nurse came in and took my vitals, again.  I wanted to say, “Yep, I am still alive, can’t we just leave it at that!   Twenty  minutes later,  the doctor was back before me.  He said the finger was not broken.  I had just sprang it badly.  He was not going to  splint it up, because he thought my body fight against it.  I thought he just didn’t want to go through the hassle of casting my hand. I think if my sister had been there, she could have argued the point, and won. I have no idea how my hand would have taken to the cast, but I would like to think that it would have relaxed given time.

I ask you, did I go through all that hassle for nothing? At least, I know my finger is not broken, and I am giving you all a good glimpse of what a person with a disability goes through to get health care.  I think there is a burning question here.  Like,  how much training does the medical community as a whole have in caring for people who have disabilities?

Suddenly I felt my left index finger slide into a hole in the keyguard, up to my knuckle.  I panicked,  and the next thing I knew I was wrenching the finger out of the keyguard.  As opposed to calling for help, or ripping the keyguard off,   I heard a crack, i am not sure if it was my finger or the keyguard.  Within the hour the finger had swelled, within two to three hours it the a gross shade of black and blue.  I’m trying in vain to keep my left hand still.  My pain level is a high seven.

Having a injury when you have Cerebral Palsy is ten times harder, because my body zeros in on the pain.   Relaxing becomes an intense game of injury verses body.  Many moons ago,  my physical therapist would have me practice relaxing by having me lay down for a half hour,  just relaxing .It was the hardest thing I had to do, and I dreaded those sessions! Now I wish I had mastered the art of relaxing!

In December, when no new developments had happened, and I was stressed  out to the max, (I mean who in their right mind wouldn’t be freaked out knowing that their home life was in jeopardy?)  I wrote to the people in charge of  finding a suitable living situation for me and the gentleman whom I barely know.  In the letter I gave them a timetable of some questions I wanted answered before I could commit to sharing a home with the person in question.

The questions were as followed:

1.  Could I keep my Supported Living status?

2.  Could I keep my Section 8 Housing Stipend?

3.  How much care does the gentleman need?

My letter was never answered.  I am stunned that the letter failed to generate a response I thought at the very least the timetable would produce some needed forward motion.  instead, it just fizzled seemingly as soon as I sent the email.  I didn’t know what to do next. If I became the squeaky wheel,  where would that land me?  In a home where I would flourish, or in some place that I resented, and wishing I had fought like heck to come up with a solution that I could live with.

I am ashamed To say that I feared I wouldn’t keep my backbone straight when I most needed to, and cave in to something because I felt it was  the only option I had. I have to hope and pray that I will sense  some define presence that gives me a strong feeling of making the right decision.

Oh, I would be remiss if I I didn’t add the following bit of  information.   In February a house popped up on the radar. It was about seven blocks from where I’m currently living. Here is the kicker.  Before I could arrange a time to see the house, someone had already snatched it.    Lesson learned!  The next time a possible house is in question, I will call around to my friends and family until I find someone who can take me to see the house.

Not more than two weeks into my “new normal” I got a call from the lead supported living manager saying she wanted to meet with me, along with my sister and another bigwig at the agency that supports me. She wanted to have the meeting on Thursday, but was thrilled to tell her that I work Thursdays! At first, I just thought they were coming to talk about my email, however, I knew it wasn’t what the meeting was solely about. In my gut of guts, I could see the axe lowering on my neck! Long story cut short, this agency has been eating $87,000 over the top of the monies I get from the state and federal budget. They have been eating the money because my sister is a loyal employee and they didn’t want to lose me. $87,000! I want to puke every time I think about that kind of money being spent on my care! Of course, the agency can no longer justify shelling out that money on me. SO, I have big decisions to make, and set into action, by August first! Lots of asinine and horrid suggestions were thrown on the visionary table for me to “ponder” over.

Here are my options so far. Move to another agency with a supported living program. But with everybody facing budget cuts, what are the chances another agency will take me into their program? I could downsize everything I own and move back into a group home. Not a thrilling option! Really not an option, unless it’s something totally appealing, which is very unlikely.

Nobody wants me to lose my apartment, however, this means I will have to stretch myself beyond what I ever dreamed I could do. Like staying alone eight hours at night, and installing a bidet. Hand and hand with the bidet idea, I would wear a gown that would spread open as a person sits down. In theory I would go commando at night. If I should have the need to use the toilet at night, I could transfer myself onto the thrown, do my business, use the bidet to clean myself, probably sit there to drip dry for a spell, and transfer myself twice more before getting into bed. When I calmly reminded them of the fact that most home accidents happen in the bathroom, they replied that they knew, and would equip with a “help I have fallen, and I can’t get up” necklace. Oh, so fancy! Fat chance the necklace would do me any good if I fall, crack my skull, and bleed to death. it’s as if the agency is banking on me getting hurt, and possibly becoming further disabled. If that’s the case,… Never mind, if I write that thought, it might come to fruition, and I wouldn’t be me anymore!

Actually, What it all comes down to, by August first, they’re hoping to trim 14 hours of paid PA supports from the day. Eight or so hours at night, and four hours during the day in addition to the two they have already removed earlier this month.

They said they were willing to buy technology that would increase independence, as opposed to having human PA’s. I was also encouraged to look at other agencies.

The way supportive living was set up to run in this agency, was to have the person going into the program interview an already pre-screened person that was interested in the job. If the two people thought they could live together, the live-in would get a flat stipend each month, live rent and utilities free, get one evening a week off, and one weekend per month off. You’re smart readers, can you think of some problems that might arise from this type of living environment? Regardless of its obvious deficiencies, I have been open to this situation for years and yet have gone four years without a person willing to fill this live-in position. Now the agency has given me about six weeks notice to find a solution and are pretending that this is one of the options.

Okay now, at Tuesdays meeting, lots of ideas were tossed at me. The following idea is just really asinine! There is a long standing relationship between a woman and her live-in. Let me say that I think most people would find it taxing to live with the person served.. With this in mind, the idea would be to ask each woman separately if they would be willing to forgo the apartment and the life they have built together to move into a bigger place, and be open to live with a man who is also in the program. If the women and the gentleman agree to do this, and if the agency’s accountant can get the numbers to work, the agency would buy a duplex. The three would live together, and I would live on the other side. There are a lot of ifs in this plan! I think my chances of becoming a millionaire are greater then this duplex idea! I say don’t mess with a good relationship!

I know what is happening here! I’m not a fool! They gave me all these unrealistic options, in the hopes I will pick the option that is best for them This is the oldest tactic in the book for dealing with disabilities! Do I have the strength to fight for my independence? .

No, I’m not dreaming. I just asked my PA to pinch me, and I didn’t wake up!

Please comment .orgif you have any ideas for how to deal with this situation. Its imperative that I do something very soon, before I am forced out of the supports that enable my independence.

Before the renovation, my bedroom doorway was tucked into the corner of the room, where upon I had to  immediately veer to the left to avoid running into the closet wall. Of course, I had my laundry hamper right beside the door, narrowing the path even further. I can not  begin to tell you how many times I have ran into the closet wall and had to readjust my approach. A lot of times I got through just out of the memory of having done it a thousand times before. I get around my apartment in my manual wheelchair, and because it is easier to go backwards rather then forwards, I am sure you can see that sometimes I can get myself into a jam if I am not paying attention to where I am going.  My bedroom door now has moved over about a foot and is a good two to three inches wider. The bathroom door is now directly across my room making it much easier to navigate between the two rooms.

Now that my permanent structure has changed, my turning radius is getting some time to become natural. I am finding myself backing up into a  wall that did not exist before and wondering why I am not moving. After I made a mental note not to start turning before I can see the whole entrance of the bathroom, I have stopped hitting the wall as much.

Maneuvering up and over the metal strip which separates the carpet in the hallway from the linoleum in the bathroom was hard. Most of the time I grabbed the door frame to pull myself into the space. Now I have a grab bar just inside the door frame so that I can get into the bathroom much easier and faster. Except once in a while my front tires get cockeyed upon the strip, resist going over the small hump, and I nearly pull myself out of my wheelchair on the way to my throne. The coolest feature of the remodel is that the contractor built a cubbyhole in the bathroom wall for the door handle to slide into so that the door stands flush against the wall,  therefore giving me more space to move in an already small space.

It is funny how two different viewpoints can see a situation.   When  the county inspector came to see what modifications I was wanting. He said that at the most I would only gain is a few inches to the doorways. Well, to me those few extra inches make the world of difference!   My personal assistants are no longer ramming me into the door jam when they are pushing the wheelchair. My wheelchair had hit the spine of the door so often that it’s hinges were dangerously loose!  We all took bets on when the door would come crashing down on us.  After enduring a two hour plus Lift rides, I have been known to head directly to the bathroom upon arriving home. Before the doorway was widened there was no room for error in getting the power chair through the doorway. Quite often there would be the squeak of the wheels rubbing against the jam. Now the power chair glides right through the doorway without coming close to either side of the door jam. I am an ecstatic camper!  Yes, such things as wide entrances thrill me to no end!

The kitchen drawers were off their tracks and threatened to plummet to the floor. I asked to have handles put on the drawers, so that I can open them more easily, rather then gropping at edges of the drawers trying to get a firm enough hold to open them.  However, I secretly hoped that the contractor could figure a way to keep the drawers on the tracks, so that they will not fall out on me. I am happy to report the drawers now open without dropping down,  and glide relatively easily out and in. The down side of things is that I am well aware that the fix on the drawers is at best temporary.  There is just so much one can do to repair cabinetry make out of particle board.  I will just live in bliss while the drawers hold up!

I mentioned earlier that I did not care much for the aesthetic look of the finished project. The woodwork looks great!  I have no beefs about that!  However, most of the projects look unfinished. I do not care who you are, people expect renovated projects to blend in well with the existing environment. There is a foot length of poorly patched carpet that I am afraid is going to work it’s way loose, and I imagine myself tripping over it one day. There is a crack in the wall from when the old door frame was ripped out.  The grab bar now stands over it, but you can still see the crack. Each of the drawers has two drilled out holes where gliders were installed which is an eye sore now.  If I were the contractor, would have taken more pride in the finished look of the projects. Nonetheless, my quality of life has improved, therefore making the grant a success, in my humble opinion!  I no longer have to weave my way to the bathroom when I am still sleepy in the mornings, and in my way of thinking, that is saying volumes!

• I had many broken fingernails.  I am virtually rendered immobile when I have a  broken nail.  Every time a ragged nail brushes across an object I am set into orbit.  I mean it could be the smallest rip, and I feel it acutely!  My nails are paper thin, so they break easily. I do know I can harden them up of by applying topcoat regularly.  I just need to make it a weekly routine.

• My back or my hip hurts. If I wake up with hip pain, my usual method of relief is stretching out in my recliner until the pain is relaxed enough so that I can go about my day. It is just plain tiring holding myself up while I am typing. I will find any excuse to move away from the computer for a time while I get out the kinks. Moving around is good for the body, I tell myself when I think I have just settled in from a trip to the bathroom not more than fifteen minutes ago.

• I will want to escape my reality by reading novels.  The temptation to ditch my work is intensified when I stumble upon a page-turner!  In those times I have to give myself goals to reach before I can pick up the book again!  I will say, “Okay, you have to finish the rough draft of this post, before you can read another chapter of the book!  Just think how good you will feel when you really earned that reading time!”
  Side note: A Dean Koontz novel every six months to a year, gives your brain a good and thrilling workout!  I highly recommend, Life Expectancy!   It’s charming, witty, and most certainly a page turner

• I have to take a break at 4:00 during the week to watch Oprah!  I don’t know what I am going to do after the last show is aired!  I guess then I will be forced to add the OWN channel to my cable package.

• I signed on to facebook sometime in August, which I was somewhat pleased with, because within about an hour I had something like Twenty-five friends. It’s a great communication tool, and something I should thrive on, if I am not too afraid I would write something that people would chastise me about.  Then thirty-eight hours later my dear sweet sister whom I love and adore, suggested that I start playing Farmville and Zoo World. Well, I love playing games, especially interactive ones where I am playing with family and friends.  I love the challenge of playing games, and this was a chance to triumph over my sister!  Hours of play can pass like mere seconds.

What I didn’t understand when I began playing, was that by posting my
accomplishments with the games, I was essentially burying my correspondences
with friends.  I didn’t like that in the least, so by the encouragement of a
veteran user of facebook, I started erasing the gaming posts, even stopped the
posts from happening at all.  I got an ear full of criticism from my sister the
next time I saw her!  She said I was a lousy, selfish neighbor.  Through her, I
learned that my fellow neighbors were waiting with baited breath for me to post
my accomplishments on the game, so that they may also benefit from my
successes.

So, here I am stuck between the thought of wouldn’t it be fun to strike up some
interesting dialogue with my friends, and wanting to just kick back and build a
farm that stuns my neighbors.   Do you see the ironic dilemma I am in?  My
friends who merely use facebook for social networking tease and ridicule me for
playing these silly games!  I do agree, the games are totally silly and a
frivolous way to spend ones time!  While on the other hand, my mom who is 80+
has just started playing Zoo World, and it is fun seeing her getting into the
game.  Now I play mainly for her!  I have thought about creating another
facebook account, about I don’t want to juggle between the two.

Could I be in a depressed mind set?  Sure, the signs are definitely there!
Losing my dad, noticing everyone around me not excluding myself aging, living in
times where terrorists could potentially be living in my neck of the woods, and
hiding out because I have a gigantic pimple on my chin.  My sister thinks the
pimple is similar to Horton’s puffball flower.  However, instead of little Whos
running around, I have a whole country full of zombies.  (Ooh!  I have been
reading too much of Dean Koontz.  The family in Life Expectancy rarely had a
conversation that didn’t turn onto crazy tangents!)

Why am I exposing my pet excuses for the world to read? Well, I have to give
myself a kick in the butt somehow!  I figure if my readers knew the truth, I’m
going to work like mad to make you never think, “I wonder what excuses she is
clinging onto today?  While I am not about to promise to post something every
day, that’s just insane of me!  I can commit to publishing posts every other
week.  If by some freak advent I have the writing bug, then hallelujah I get to
treat myself to lunch out, or to a movie.  Then as an extra bonus, I will
report on some aspect of the festivities!

There you have it, my new year’s resolution.

I was forced into getting my first speech generating device. I was going to be mainstreamed into my neighbourhood school system. All of my beloved teachers and parents agreed that I needed a way to communicate with my new peers and teachers. They were correct, of course. Nonetheless, I felt like they ganged up on me! I resented, the idea that my voice wasn’t clear to the average person I met. However, I thought if I tried hard and long enough, a person could learn to understand me. Clearly, I was day dreaming. because it is, a rare friend who will take the time to learn my peculiar axcent.

So, I was stuck learning a device I loathed, called the handivoice. The Handivoice was portable, true, but atrocious to learn. How many of you are, into numbers? Well, the handivoice just might be the AAC device of your dreams. The way this device worked is through a numeric code system. For instance, typing one hundred, would produce the sentence, I need help. 550 would start the words for the body. names, had to be spelled out by using the alphabet, codes 701 to 726. My sister’s name is, Carol. That’s five, three digit codes. We were able to shorten that down to only two codes. By using the word, care and the letter L. So, the codes for Carol was something like, 597 and 712.

I am not a, numbers gal. I was not motivated to learn this language composed of numbers, to say the least. Therefore, my speech pathologist created a cheat sheet for me on a battery powered scrolling directory. In some instances, the directory became my, low tech AAC device.

The handivoice had several drawbacks. It had no notebooks in which I could store things I wanted to say. I clearly remember preparing my graduation speech. I must have spent two hours programming my Parting remarks on to the handivoice. after I was finished, I went outside to get some fresh air. When I wanted to go back into the school, I singled to someone to help me with the door. As I was doing so, my hand dropped on to the devices power button. The handivoice turned off, and my speech was gone! Horrified, I raced to my speech pathologist, and she helped me to reenter the speech into the device, just in time to go to graduation.

If a device is not capable of storing the user’s own personal aray of conversational starters, and personal stories. It would be like hitting a baseball and running towards first base, each time a person turns on their communication device.

Another strike against the handivoice, is that it had just one voice. it was a deep male sounding voice. I was a twelve year old, petite thing. what’s wrong with this picture? For one thing, I wasn’t driven to use the device, because I was embarrassed by the voice. Second, in some instances, the synthesized voice was a lot harder to understand than my own voice. Why would I want to use an inferior voice then mine?

The handivoice finally came in handy, when I was meeting my new classmates. I let them play with it. I was really popular in school for a, while! However, when I had something I wanted to say to my new friends, it was difficult to reestablish control over my device.

After three years of trying to make it work for me, I severed my relationship with the handivoice. I just didn’t get the hang of using it for a reliable communication source. I vowed I would never have another voice generated device again. I kept my promise for over fifteen years. During that time, I fluctuated between two AAC devices, the canon communicator, and a Toshiba lap top computer.

The canon communicator was a small device with the alphabet and number keys. As I typed my message, ticker tape spewed from the canon’s side. I loved the canon, because it was very small and portable. My communication partners loved walking away from our talks with my end of the conversation. The only flaw the Canon had, was that it didn’t have anyway to store the key things I said over and over.

The Toshiba computer had a synthesized voice. However, I can probably count the number of times I actually used the voice. So, I can safely say, that system didn’t count for much.

Am I regretful, that I didn’t try to find a better communication device alot sooner?  No way! how could I miss something, I thought I would hate?

A few perceptive people would wonder out loud, I should think there would be a more sophisticated communication device for you. My favorite reply was to roll my eyes, shake my head with exasperation, and say, no this suits me just fine! years rolled by.

My interests and goals changed. I became involved in my state’s Partners in Policymaking class. A class where parents and self advocates, learned skills to advocate for changes in our state. I had to give several speeches through out the course of the class. I wrote the speeches, however my personal assistant was the one who read them, while I awkwardly, sat next to her, and acted like I belonged up there. I was really bothered by someone telling my own stories.

That question that mere strangers asked me, kept spinning in my head. Was there a communication device somewhere in the world that I would be willing to use? As fate would have it, one of my classmates from partners used an AAC device, and he had nothing but good things to say about his speech pathologist. I reasoned, with myself that there was no crime in just seeing how communication devices had evolved, over the years.

When Doctor Fried-Oken first saw me, she didn’t have a shred of doubt that she couldn’t help me to find a communication device. It was just a matter of finding the right match. It was the voice that hooked me first. I heard the best synthesized voice, and it came really close to sounding like a feminine voice. My heart was soaring through the clouds. Then, it plummeted back to earth, as I learned how the device worked. Another coding system, my brain was screaming at me to run away. Doctor Fried-Oken reeled me back in. “You can learn this device, Jan. It works by icon association.”

I found my brain could retain that the icon APPLE, stands for food when I pair it with the NOUN icon. When I pair the APPLE with the ADJECTIVE icon, the word hungry is typed. And, when I place APPLE along side the VERB, icon, the word eat appears. Then by grouping two picture icons APPLE and CACTUS, I have accessed, the Mexican food group. So, by stringing together APPLE, CACTUS and MORNING, I will get the food, taco. Just trust me, if you emerge yourself in learning this language known as Minspeak, as I did, you would be ready to communicate with moderate success, within six months.

When I told my family I was thinking about getting another speech generated device, I received mixed reactions. My mom supported me, even though I saw the doubt in her eyes. Carol was very blunt with me. She said, you hated the handivoice. What makes you think you will like, this new device any better?

I visited Carol one beautiful weekend. She was anxious to get outside, and do some gardening. she said I could join her outside, but she forbid me to talk to her. If I communicated with her, it was likely that she would have to stop what she was doing just to focus on my words. I agreed to hold my tongue, however I had Carol mount the communication device on my wheelchair before going outside. I figured she could garden, while I practiced my new language of Minspeak. I held my tongue alright, however we ended up having a conversation anyway, thanks to the Liberator communication device. she didn’t have to stop gardening once to interpret my words. I showed her, didn’t I! From that moment on, Carol was a big fan of the Liberator. The next thing I knew, she was asking me to give some presentations with her.

My biggest worry about getting the Liberator, was whether I would use it. Well, the Liberator was literally falling apart when it’s sucessor, the Pathfinder arrived. I held off getting the Pathfinder for as long as I could, because I didn’t want to learn to use another device. As it turned out, I was able to transfer my programmed stuff to the Pathfinder. by the way, A feature that I think the world of.

The only frustrating experience about getting the Pathfinder, was that Minspeak, (the language program I had used on the Liberator for ten years,)   had under gone a transformation to make it easier for newer users to learn. Once I reasoned that it was like learning a slightly different dialect, I absorbed it, quickly.

 I have caught you up to the current device I use, called the Echo. I have only been working with it a month, and it’s been an easy transition. Each of my last three devices have come from the same company, which has made transitioning to new devices so  much easier!    

Now I can have a little fun sharing with you what features I would build into a communication device. I want to think of a thought, and have my device say it. However, thoughts coming directly from the brain are so random, that I would likely get myself into trouble after five minutes of having such a device.

I know there, are groups working diligently on disarthric speech recognition. I know, because I have supplied a group with a sample of my disarthic speech. It is a fantastic ambition, however my voice fluctuates so greatly from day to day, that I fear that it is an impossible task. I sincerely hope they prove me wrong one day, soon!

I want an AAC device that will reflect my mood. If I want to sound sarcastic, I want people to understand that I’m being flippant. I like to tease people from time to time, and sometimes it frustrates me that the synthesized voice is so monotone, because it doesn’t reflect my unique personality.

I want a button for loud environments. whenever they are, in loud places synthesized voices become deathly quiet. It would be nice to push a button and have the volume raised exponentially so that I can be heard.

Having communication devices that will get a, animal’s attention would be a boon. I had a wonderfull dog for ten years. Duke knew my own voice well, however he totally ignored my communication device. I just think there might have been a time when he was loose outside, and in a dangerous situation, where getting his attention was vital. I wish I had some signal on my device that only dogs can hear, which would have dropped Duke immediately. I believe the technology is already out, it’s just a matter of getting it on communication devices.

I spend significant amounts of time waiting around for transportation. I would love it if I could down load books and games on to my device. Then along with that, I want a long lasting battery, for obvious reasons!

I wish my device would tell me when I’m about to make a huge communication blunder. The other week, I ran into a high school friend. We only had a few minutes to exchange some remarks. Rusty, shared how his wife had him busy driving her and a co-worker all over town, to get to job engagements. I hurriedly typed in that I thought Amy should start paying him. However, in my hurry, what was actually said was. Amy, should start selling you. He had a puzzled look, and suddenly I realized what the communication device said. I must have turned every shade, of red possible. I know I’m being facetious here, because I am the one who needs to be aware of what I’m typing. However, ten years ago who knew that you would be able to turn on and off your house lights from your phone half way around the world. So, anything is possible.