February 2009 Archives

☼ WHEELCHAIR RAMP PLEASE DO NOT BLOCK

☼ - stands for the handicap symbol, you know, the one showing a wheelchair.

This subject may, or not pertain to any person afflicted with HIV/ AIDS or even PML, but it is something I have to deal with for now. I never used to concern myself with issues about the disabled, but then, PML. I have been driving for one year and seven months. I am so excited to be driving again. It remains a thrill for me, but has become routine for me now at times and presents me with a unique view of life, so I notice things now like parking, curbs, doors, bathrooms, etc. Just be happy if you can walk and do not have to deal with all of these disability rules and hurdles.

I got tired of people parking on the blue diagonal lines between some handicap parking spaces. It is designed that way to allow for extra room. The gap would normally allow me enough area to deploy the ramp from the right side and be able to get in the mini-van and drive. Unfortunately, some people with a handicap placard or plate feel they have a divine right to park on the blue lines to my right if they can maneuver in ignoring the “Van Accessible” signs. I cannot tell you how many times that I berated the unthinking culprits! And, their excuse is, “I was only quickly running in for a few things.” So, I guess that makes their rudeness okay.

When people do this, they prevent me any room to get into my van and it is extremely aggravating when I have perishable, frozen groceries! Finally, I was blocked in which was to be the last time and after arguing the stupidity of the act, was told about a company that might make me a sign for the door with the ramp.

I was not thrilled at the prospect of ruining pristine exterior of the mini-van but I was exasperated with the inconsiderate perpetrators always blocking the wheelchair ramp, so I went to the named manufacturer. The owners were aware of my concern and opted for clean block lettering along with the handicap symbol all in red sized to my approval on the right side access door.

I was hoping that this might help!

Before I go on, let me tell you that I usually try to park away from the marked handicap spots. I do this mainly for the reasons of rogue shopping carts and careless door openers.
I like to find two spaces that are a safe distance from the hubbub of the main entrance that border a curb or a shopping cart corral to the right which allows me the room to activate the ramp without worry.

Another motive is that I have a motorized wheelchair and do not feel that I need to park right by the doors. I feel sorry for the elderly and those who really have a difficult time walking. It makes me smirk when I see a seemingly very agile and sprightly person of any age in a beefy pickup or SUV using the spaces for handicap while an arthritic person of eighty or so with a cane has to park at farther distance in an unmarked spot.

That sight brings me to the issue of courtesy. I only see constant concern for the disabled in the elderly – like sixty-five and above. The middle-aged: it is still done with a smile by some and others with a wry sneer as if it is a forced imposition of politeness. Children, teenagers and twenty-something’s ignore any niceties or civility for the most part. A lot just see you as an inconsequential part of life that does not matter to them, but then there are those “youngsters” that surprise me to no end and when that happens, I make sure to thank and praise them.

All I think of is karma!

Many people are quick to offer opening doors or getting an item off a high shelf and usually they are over thirty. I tease people when they open both doors of a double-door entrance by asking them jokingly, “Do I look that fat?” I rarely have anyone reach for an item on an upper shelf. I thank them anyway and usually amaze them by standing up from my wheelchair to grab it myself. Cashiers are always quick to ask if I need help taking my few bags to the van or if the bags themselves are too heavy. I normally keep my shopping trips light needing only a few, easily handled bags. On the rare occasion that I go crazy and do need assistance, I am not afraid to ask.

Well, back to my sign on my mini-van’s door for the ramp. I was shopping for a few things one day recently and seeing it was not busy, I parked in a handicap space that had the blue diagonal lines between each spot. Mind you, it was not busy and this particular store had a large number of handicap parking places, so many were empty. I thought this would be an easy in and out shopping jaunt since I only needed to get two items. Fifteen minutes later, I was finished and on my way back to the van.

I could see this dark green car parked next to me on the right as I neared. It was confusing to me since so much handicap parking was available. I approached and noticed that this car had been parked haphazardly and was not squarely between the parallel lines, but about a third closer to my van taking up space on the diagonal blue lines. I could bring the ramp down, but it only allowed me about eighteen inches to navigate the turn to get on the ramp. I was disgusted! Obviously, they missed the three-inch high red lettering asking them please not to block the door! It cannot be missed since it faces the driver’s side when someone parks to my right.

I ended up having to back onto the ramp at an angle which the motorized wheelchair handled thankfully. But, I got hung-up as I turned to get on the ramp and needed an extra push to make it the rest of the way. I had no choice at this point, so I braced my leg on the door of the car to shove myself backward up the ramp. It worked!

The car was dark green, unwashed and therefore, covered by salt and grime. (It has been a snowy February here in Pennsylvania!) On the door, was a clean spot where I had placed my foot and a small concave impression from when I pushed myself back. Remorse? I had none because they should have parked better and could NOT have missed the red warning.

Why are some people so conceited that they fail to see how they affect the world?

I have decided to combine the aspects of an update with those of my BLOG which would give more insight as to why I have been so emotionally volatile lately and seemed so distant. I want family and friends to know why I have been so difficult since mid-October. I have earnestly begun to dig myself out of whatever doldrums I created for myself. A new attitude, right?

I am hoping this sample of my writing tells my friends and family about why I should be an author and why I have worked so hard on my book.

As of today (2/4/09) – my T-cells were 634 and viral load remains undetectable. I should have gone last week, but it snowed on that day I was supposed to go. October 1, 2008 – T-cells 853 and VL undetectable

Turning 50 this past November was not only a milestone for me, but heralded a period of self-pity with a lot of indifference that lasted from the end of October 2008 until recently. I had too many thoughts of, “what ifs” which further depressed me and made me make the horrible comment of that I should have been left in New York City back in 1999.

Even the good news of a phenomenal T-cell count with an undetectable viral load on 10/1/08 just made me even more melancholy and apathetic as my birthday approached because I remembered my past and the trials I had to face since November 1999. These memories were probably made more vivid since I began re-working the format of the book and had to re-live all those ups and downs.

A very sobering thought was that November 2009 would mark ten years of my diagnosis of HIV/AIDS/ PML and by the end of 2009 the loss of my walking. Ten years in a wheelchair is such a depressing thought and throw in the HIV – well, that is like being having a bucket of cold water thrown on you after just being saved from drowning. I was distraught over such a realization. I gave up doing a lot of my exercises and therapies in disgust when I thought, “what for?” I just kept up the stationary bike, handwriting and reading aloud though, so I did not feel like a total waste of all my work in the past nine years. I did stop writing in French and Spanish as I felt the need to embrace a more spiritual aspect of my life to try to overcome such sadness as I practiced my handwriting. I am hoping these tidbits of heartfelt assertions continue improving my demeanor.

Lack of relationships of any kind outside the family had me very angry I guess. I discovered most friends are becoming mere impersonal e-mail and card acquaintances – all because my life effectively changed in 1999 and I ceased to be a vital force affecting their lives. I have to take most of the blame because I felt I had nothing more to offer so I slunk to the back hoping to be unnoticed, and then more self-loathing for resenting them for getting on with their lives.

Ah, but the chance of new relationships have also left me bitter in ways too. I grew irate and tired when I realized that often I would be offered companionship but only out of their beliefs that I was desperate enough to settle for something that never I would have looked twice at before getting ill or, my favorite – having enough money to make me worthy of their attention. I used to get so angry, but now, I just remember that saying, “What goes around; comes around.” Karma. Whatever you put out there; it comes back to you. I really believe “it” has come back to me ten-fold. I was a foolish man before my illness.

Well, enough is enough, I say of my self-imposed sorrow. It is too draining to continue this wallowing in self-pity when I think of all that has been done for me. (Special shout-out to my sister Arlene!) It is a very enlightening thought when I realized the blame for my life is my own and that I, myself, need to deal with it all. So, I have begun rebuilding my exercise and therapy routine to “spice” it up for the future and felt the need to begin dieting too! I am reviewing my Pilates DVDs see if I can add new routines. I am using my big rolling walker to help me with more standing exercises – using my imagination. I am truly looking for ways to rev up my exercise and therapy routine.

I also have an appointment on 4/3/09 for “brain injury therapy” which I am extremely excited about. This is a lot of the same things they work on with stoke and accident victims. I am their first case of PML and they are eager to begin. I am hoping this gives me even more ideas!

I need to change on both the inside and outside and have to start somewhere. I have re-worked my book focusing more on the challenges I faced over the years. I plan to begin my mailing out inquiries in order to find an agent very soon.

Halloween was quiet for me and I was glad when Arlene and Jimmy were home for Thanksgiving. I did not need to cook – just OVER eat! Arlene and Jimmy did get a cockatoo which was to be for the truck but the bird was not raised as a traveler. Unfortunately, the bird died suddenly by an accidental need for them to brake hard.

Christmas snuck up on me rather quickly and although I decorated, baked cookies and bought gifts, my mood was not the usual gung-ho attitude. Under this façade, I remained in a wary mood of many things, even Christmas carols would set me off, so I did not listen to them. But, I did manage a new accomplishment – I addressed my Christmas card envelopes directly on them without the safety net of labels. I felt surer of my handwriting.

For New Year’s I had lobster – made a pig of myself!! I loved every bite though!

I did get a good laugh from Shiloh, the female dog. First, I need to preface this story by telling you every year I put my Christmas tree in the bay windows of my room but Shiloh likes to sit in these windows and watch everything especially any vehicles coming up the driveway. My bedroom faces the highway and offers the best view of the driveway. Shiloh is content to look out for hours and if she hears any noise, she quickly runs to look out the windows. With the tree up, it blocks the view from HER window, so I need to try to keep her from the window and knocking into the tree by creating barriers when I leave. I used my stationary bike and my folded up Ab Lounger to create a “V” one day which I thought would be effective. I guess my effort was not successful because when I came back home, the ornaments were off that section of the tree nearest the “V” and even the angel topper was hanging off to one side by its cord. I noticed that the Ab Lounger had been moved a bit which allowed her head to squeeze through. I just had to sigh and ask her, “What did you do?” She dutifully slunk away, but I could not even yell at her because it is her window when I think of it and the tree is in her way. I began laughing to myself when I pictured her trying to wedge her head into that small opening by thrashing back and forth, eyes closed, straining her neck - like the Great White shark footage you see when they try to get at the man in the cage! It’s humorous. So, that explains why the ornaments were off only from that spot.

Shiloh is happy the tree is gone and she has her full view back.

I am tired of winter and am looking forward to spring and sunshine soon!