Saturday, January 07, 2006

Dueling Disabilities:"Not Only Can't I Walk Worth A Darn, I Don't See Too Well Either!"



The title comes from a quick speech I rattle off for our local bus drivers to get them to tell me what bus has just pulled up. With a walker, I no longer appear to have almost zero vision. I did not admit I needed a walker much easier then I admitted I needed a white cane. I thought I could "fake it". I was at a religious retreat, in my teens, and fell down a brick stairway on the side of a steep hill. I was falling head first. I knew if a miracle didn't happen, I was going to be in heaven in real short order. I cried out to God in my mind: "If you keep me from getting killed, I'll get serious training as a blind person!" In mid air, my body righted itself and I landed feet first (in balance) on a stair about four feet from where I'd started to fall. Needless to say, I got some cane travel training. I was still convinced I could "pass" as sighted. I viewed being blind as worse than death.

Eventually, I got proper training in alternative methods for travel, sewing, cooking and reading. I was relieved that, with a cane, people answered my questions, instead of assuming I was a nut. You can't blame people. I'm standing under a train sign with letters six inches high and asking: "What train is this?". People would just walk away from me, when I had no cane. With a cane, the response rate was higher and positive. I grudgingly took on the role of being "blind".

Dealing with my Cerebral Palsy, was another problem entirely. I've had problems falling down ever since I can remember. It is like, every so often my brain forgets to tell my legs to support my body and I fall, sometimes, standing, but mostly while walking. I used to blame it on not being able to see very well. I was totally ashamed of having Cerebral Palsy, as I have been called "spastic". My movements are a bit jerky. It is a very touchy area for me, even today.
My aunt and cousin said my handwriting made me look retarded and I looked like a freak with those "things' you have to put on your face". (very strong magnifying lenses in glasses). It is still painful to write this. So, I never considered that my walking problems were from my Cerebral Palsy.

Then last year in November, I got mugged for the second time in ten years. I fought to keep my cell phone and was violently thrown to the ground. My right ankle has never been the same since. My falling episodes became weekly events. I ripped the knees out of four pairs of pants. You'd think, I'd want to investigate this. No, I just decided I was afraid of walking and avoided going outside whenever possible! (This is called D-E-N-I-A-L, the first step in the grief process). What little physical strength I had began to leave. As a housekeeper, I need physical strength to do the job. I also need to not be falling down stairs! Here's what it took to get me to investigate getting a walker. (No, see, you aren't the only stubborn one around.)

I was at work at Maria's starting to walk her huge Newfoundland Hound, DeeDee. The sidewalks are extremely root infested and uneven in Maria's neighborhood. She also lives on a rather steep hill. I was about two feet from the path leading to their home, when I felt the all-to-familiar sensation of falling. My cane flew out of my hand, as I instinctively tried to brace myself for another ground-kissing episode. I also let go of DeeDee's leash. DeeDee immediately backed up and deliberately sat down right in the path of my falling body. She broke my fall with her back turned to me, in a sitting position. She remained absolutely still. I can't get up immediately after I fall. My body just lays where it is, for a few seconds, and then I can start trying to stand up. I felt DeeDee's fur in my face. I was in tears. I wanted to bury my face in her fur and sob. But I had real problems.

The street is on a steep hill and my cane had jetted into the street and rolled away. I was bleeding and disoriented. I wondered if I could walk the dog, after all of this. Luckily, a neighbor saw me fall and retrieved my cane. With cane in one shaking hand and dog leash in the other shaking hand. I timidly walked a very slow moving DeeDee. I swear that dog understands my problems well enough to read what I can't handle her doing. I got through that ordeal, not telling Maria of my adventure, other then to try and cover why my knees were skinned-up and my pants torn up. She didn't push it. I wonder if she'd seen this one coming?

With work out of the way, I boarded a bus for the forty-five-minute trip home. The bus broke down, so we had to get off and board another bus that was waiting for us. I was attempting to leave the crippled coach, when I tried to put my weight on the right leg, and it just crumpled under me. Down I went, that's two falls in one day! I couldn't get up. The poor bus driver, already stressed out from a mechanical issue, started to run for her radio screaming: "Do you need an ambulance?" I freaked out. That would cost at least $100 and I wasn't ready for a hospital! I screamed that I was okay (what a joke,) and scrambled up to a standing position. By now my entire body was shaking. I looked like a diabetic going into shock.

Once safely in my room, I began to relax. I had a hard time ignoring the events of the day. I decided, that if I'd be more careful, everything would be alright. Then I got up and began to walk across my twelve foot by twelve foot room. My right foot caught on something and down I went! That is three falls in one day. This was the first time I'd fallen in my home. I grabbed a flimsy hobby table, trying to break my fall and managed to bang me and some of my belongings up very badly. That was the moment I surrendered. I knew I was going to call my HMO in the morning. I had to DO something!

I got the standard Advice Nurse and related my tale. To the credit of my HMO, when they think there is a real problem, they jump to it. I had an appointment with my regular doctor the next afternoon! It was nice not to be in a psychiatric examination mode. This was very different.
I could feel my doctor intently searching and working very hard to determine what was wrong.
He had me do a lot of movement things. Touch my nose, lift my arm, and then he started working with my legs. I was passing everything and wondering if I was making this entire thing up. Was I making a mountain out of a mole hill? Then my doctor discovered my right foot.

My right leg is a half inch shorter then my left leg. My right foot had almost zero flexibility, or range of motion. He had me take a barefoot stroll around the office. He started entering a small novel into his computer. Sure enough, my doctor had found something. He was going to send me to Physical Therapy: "You have the worst Palsy gait I've ever seen" (Well, I never do things in half measures!) I then asked about a walker. He had to make the more and more common speech of his day: "Yes, you could use one, and it's not covered, unless you're totally bedridden". I sensed his tension. I bet the doctors hate this routine. But, being a veteran of The System, I already figured I'd have to buy my own walker. I couldn't wait to get one. I now could admit that walking, at all, scared the hell out of me.

I researched on the net, but didn't feel I could wait a week for shipping. I went to several pharmacies and right across the street from my home, I found MY Baby! It is a Rollator. A walker with the two front wheels able to pivot, for turning (truly in a circle, if you desire), a built-in seat and two sets of hand brakes! Just using it in this tiny pharmacy sold me. I knew I walked better when pushing my shopping cart, or a grocery cart, but THIS was IT! The pharmacist let me make time payments while taking the Rollater out the door immediately. A truly merciful man. I felt better and more confident immediately! I knew I could prevent falling, because the walker gave me more points of balance on the ground. I wanted to truly dance down the street! Hell, I wanted to walk down the street, something I'd been avoiding for six months!

I don't particularly like Physical Therapy. My doctor is wonderful, but the personal discipline of those daily exercises throws me. I was sure, with my Baby, in tow, I'd never fall again. Oh, but old CyberGal likes to push limits. Maria's home is off-set from the street, sharing a hillside with several other homes. There is a brick path made up of very unevenly placed bricks and stairs. I forgot that my vision is still an issue, miscalculated and fell on the path. I still haven't quite gotten over that moment of sorrow. I have taken a break from Physical Therapy, as my morale is still in the dumper over that fall.

I have to walk a 120-pound Newfoundland Hound, with a walker and a long leash. It has its comical moments. Before we got a longer leash, poor DeeDee had a walker rail constantly goosing her! She is excellently behaved and knows that if I put any pressure on that leash, she is to STOP! She does, every time. I think she knows that our walks together are a bit hard on me, she now shows more affection towards me, after our walks. She is a terrific girl.

Maria, seeing the writing on the wall, hired a dog-walker. I went home and cried, as I was terrified of losing my job! Maria and John are wonderful people. They just look at this situation as something that has to be dealt with and that is all. I love them for being so good to me.

I've had my Baby for almost nine months now. For the first few months I'd sing to it and wanted to write poems to it! The relief of not being afraid of falling was like nothing I ever remember. I never had this kind of a reaction to my white cane, but three falls in one day made a believer out of stubborn old CyberGal! I had to change my entire approach to riding busses.

With the white cane, I'd sit as close to the driver, as possible. Usually in seats specifically for the disabled and or elderly. I could request my stop to be called and even with my slight hearing difficulty, I knew when to get off the bus. Yes, I blew part of my hearing, standing under the base speaker at a Lead Zeplin concert. (marijuana induced bad judgment). With the Rollater I had a problem. I couldn't get it and me in the little cramped seats (on platforms, no less). So, I had to board at the side of the bus, where passengers are getting off the bus. This is also where the Wheelchair Lift is located. Once on board, there are lovely pull-down seats that accommodate me and my Baby, just fine. But, now the driver thinks I can see, to figure out my stop. I'm also far away from the driver and my hearing may be a problem.

This is why I make a cute speech to locate my bus. I then ask for permission to board in the back, as I flash my bus pass and once seated, I yell out my other issues to a very helpful bus driver (99% of the time). Using humor helps them and me deal with all of this attention-to-my-disabilities. I hate being a bother to people. I still fight mountains of guilt, as people man-handle my Baby into their cars. Sometime, I have to take the front piece off my Baby, to make it fit. Oh, I want to crawl away and hide! This too, is all part of ye 'ol grief process. God continues to show me, through my wonderful friends, that it just ain't that big a deal. I now am back to walking an hour every two days and my general physical and psychological condition is much improved. Exercise, IS really a good thing. But, not falling down all the time, is the BEST thing!

1 comment:

MacPhilly said...

That is one sweet set of wheels there sister CyberGal! Many happy miles with it!