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A 'late' January 2009 Update

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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!

1 Comment

Hi, so glad to read you again, i felt identified with this post in several ways, it looks like 2009 will be a year full of changes for everybody. I am glad you are feeling better, hugs!!



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This page contains a single entry by Ron published on February 4, 2009 4:39 PM.

My fiftieth birthday was the previous entry in this blog.

Disabled, handicapped, physically challenged.... is the next entry in this blog.

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