Ron's POZ Blog

November 7, 2008

This latest BLOG will be added to my reworked book as its ending.

It hit me like a ton of bricks this morning on November 6 just as I was slurping the last of my milk from my bowl of Cheerios ®, I’m turning FIFTY tomorrow! I almost choked on my mouthful of milk and then my eyes watered when so many memories hit simultaneously like cold water being thrown on me.

I never imagined that I’d see fifty back when I was in my deep and darkest depths of my PML/ AIDS/ HIV back in February 2000. Hell, I was surprised when I celebrated my forty-second birthday later that year.

I endured a difficult time over the past weekend thinking about my infamous anniversaries regarding HIV. On November 2, 1999, I was hospitalized and told I had full-blown AIDS and then on the third of November I might have PML. So, I think I was allowed feeling depressed and empty for those few days. And, like a trooper, I dusted myself off, wiped self-pity tears on my sleeve, took a deep breath and told myself to get over it. I have a future now and had nine more years of memories, both good and bad.

Honestly, I never expected to survive, never mind learn to overcome challenges and thrive. I was surprised even by my thought back when Sadie, my cocker spaniel, died on March 3, 2008 at fourteen years of age. I was sure she would have outlived me.

Sadie’s passing just really brought into focus all those that I had outlived over those nine years: Aunt Mary, my cousin Richard, a sister-in-law Leslie, a close family friend Ann, then her husband Jim, my step-mother Mary and other assorted family friends, young and old.

I hate when I think of the upcoming demise of my mother a father. It is a very real possibility now since June 2008 because my mom was diagnosed with inoperable kidney cancer and given one to five years. Then, my father has had maybe four episodes of congestive heart failure and the doctors say there is no more they can do. His lungs fill with fluid every few weeks it seems. He’s had angioplasty, catheters, open heart surgery over the last decade or so and now has a defibrillator. So, I get it. Wishing and praying; sometimes crying when I think about my impending loss.

The devastating thought that I will live a long life – alone. Well, lonely, because I have a big family. It isn’t the same for me when I look at my siblings with children or spouses and think how lucky they are that someone will be there when the do pass. Me? A sister, brother, niece or nephew just is not the same. I would hope I find my lover and we build OUR lives together. And when the time comes, we will have each other first and foremost.

On a better note, I am glad Obama won! Finally an intelligent, thoughtful and congenial man who has a chance to undo all the crap we had to endure the past eight years! It is a shame though that he has to fix this mess.

Well, I guess I will need to get a colonoscopy after tomorrow!

Somebody recently asked me what I was looking for in a lover. “Wow!” I thought to myself. I never really considered forming a list whether in my mind or on paper, but it has made me think about it a lot the past few days. What DO I want in a lover?

Other than the obvious – he must be sexually compatible to me first of all.

Then temper that sexuality with romance, passion and desire. Monogamy is a must because I would only hope we complete each other and we would only need each other. I know that may sound so provincial to some, but all those damned romantic books and movies end with a “Happily ever after” and I want that too. I only imagine good things when the story ends. I don’t imagine an unfaithful spouse, arguing or a divorce. Let me live in my vision of unending love!

Sexy is watching my lover: play with dogs and animals, playing with kids, enjoying even the simplest glorious things life can offer. And, the hands-down sexiest thing he can do is while he’s offering me his hand as we try something new and say “C’mon, try it with me. I promise to watch you.” So, he must like animals and children and enjoy being outdoors.

Sex, passion and desire all tie into romance, I think. To me, romance is sexy and almost always can be found in the smallest things without any effort. I think having coffee while reading the paper and touching my lover is sexy AND romantic. A light kiss or a hug for no reason is romantic. Sitting with my lover – listening to music or watching a film or just quietly – is romantic.

He should be intelligent about life’s lessons so not necessarily only book smart spouting theories and statistics.

Is it unrealistic to hope to find a man with a heart and compassion about my situation and a sense of adventure to try things with me again or be a willing partner in various outings? I would enjoy being with a man who was not embarrassed by the wheelchair and would be excited to go to a concert, play or movie with me. I only imagine what fun it might be to go shopping even. I could make a list of things I would want to do with a lover from high school football games to bazaars to restaurants.

I guess that being kind and sweet is a given.

Charming them and becoming part of my family are big pluses too.

I have my schedule of exercises and therapies and would expect him to be an active guy. I would love to have him help me at home or even take me to the gym to enhance my home routines once in awhile.

I prefer a man with a spiritual side. That would make me more comfortable knowing that he believes in a higher plan by a higher being.

There are so many little things that a man could do that would make my heart go flip-flop and keep me in love. I can only hope that I can find a man who never tires of little things and that I can keep him happy and smiling.

Dad and his Sour Cream

My father is eighty-one years-old and enjoys when we go out to dinner because he likes my company too. I am a good sounding board for his complaints about his neighbors and all his projects he has yet to do or the household chores he needs to complete.

So, we go out for dinner at 3:30 p.m., 4:00 if he’s in no particular hurry.

We talk about the usual things like the weather, our cars, relatives, etc. But he always amazes me that two simple projects can take up his entire day. A trip to the pharmacy and a doctor appointment can fill his day. Most of us run by the pharmacy to/ from the doctor and still have a major portion of the day to accomplish other things. If he has three things to do in a day, he’s harried and out of breath from “all the running.” My dad LOVES to take his time which means he enjoys chatting with his pharmacist or the doctor or anyone who will listen for that matter.

I should mention also that our dinners take up to two hours sometimes because he is too busy talking rather than eating.

Dad likes sour cream which he had for a baked potato. It came in that little tub with the main meal. Dad immediately put two teaspoons on his potato but then ate two more heaping spoonfuls like ice cream. He ended up with a small dollop on his chin which I pointed out and he said, “I’ll get it eventually!” and kept eating. Then fifteen minutes later, I could see him digging the remaining sour cream out onto his potato. He complained, “They never give enough sour cream!” I just balked and smiled as I told him that he shouldn’t have been eating it like he had a bottomless container; then he would have had enough for the potato. I told him that next time we will just need to ask for another extra portion so then he should have plenty.

We had a nice dinner and I enjoyed talking to Dad and the chuckle he gave me.

It brings tears to my eyes though because my father has a weakening heart and his time is limited. He has had open-heart surgeries, catheters, nitroglycerine pills and sprays over the years and recently - a defibrillator and now patches.

I have a hard time when I look at my frail eighty-one year-old father when he’s short of breath or having a hard time standing up straight. I cringe when I look at his misshapen fingers wracked with gout or arthritis. I hate the fact that no doctors seem to know for sure what it is attacking his fingers or how to treat them. I have very little faith in these so-called experts because - look at my situation. No-one really knew how to treat PML back then in 1999. I surprised many doctors just by surviving and then the rest when I was determined to thrive.

I look at him and remember the vibrant strong man who would adeptly show us how to do various things and play with us when we were children. From Hide-and-Seek, swimming and even weeding the garden he moved gracefully doing all his fatherly responsibilities going from one to the other effortlessly. My father was always an active man. He enjoyed doing projects around the house like remodeling and tackling any fix-it task. He liked yard work and gardening and was very proud of each new venture and did not hesitate to show us children the benefits of hard, but worthwhile effort, and when we saw the end result; we beamed at our success.

My father taught me a lot. I never realized how important it all was until now.

Looking for Love

I did not want to spend the rest of my life without a partner; be it years or even shorter than I hope my future to be.

I was tired of living vicariously through friends spouting tales of their latest conquest or conquests. Then, my parents’ health became such a personal issue for me at the end of June which motivated me even further. I looked at them, then my siblings and realized I do not have a spouse or children even, when I enter my waning years. I am sure that that thought gave my quest to find a lover even more urgency. I also had even more pressure when I got my last T-cell count of 853 – I just may have a long life after all.

So, I began where I could, and being mostly homebound, the Internet became my primary choice of initial contact. I was very focused on finding a man who would be worthy – well, not an asshole at the least. I did not limit myself to just one option – I went to the mall, various stores and restaurants too and will embellish those later.

I went to two old stand-bys on the Internet first, one of which is dedicated to HIV positive people and the other, probably the largest and most diverse. Diverse, yeah, that’s the best word to describe it. It has guys and girls of every persuasion and mainly geared to the twenty and thirty year-olds and sex fiends. I find that I have very little patience for their naivety, inhumanity and downright stupidity of some; not all. But, it makes you wonder what ARE they thinking? I made a few acquaintances with men on both sites who I knew were positive and those that never committed themselves to an answer. That they would choose not to disclose their status is fine with me in their profile, but I would think they would, or hope they did, when talking on the telephone or having lunch.

I did find another site by chatting with a guy and found this one a bit easier to connect with men. It had members that seemed much more mature mentally and skewed to an older group of men – forty to seventy mainly – “daddies.” I am in heaven because I prefer men to act like men – that is MY preference. So don’t berate me for my choice of the “31 Flavors.” Everyone is entitled to their own.

I think I hit pay dirt with this new site even though some guys remain egotistic assholes when they are too old to play games anymore. The site itself is not an HIV positive service but the members seem to be a very good mixture of both and so far, all have been understanding with only supportive comments. I am surprised yet though by how many list, “Let’s discuss” under safe sex but never mention HIV in their profile, but YOU know, right?

Over the past few months, I had felt almost emotionally forced to find a connection and in a way, began feeling like a “cyber-slut” whenever my chats went to sex. I hate to sound so hypocritical – I am a sex maniac in a prude’s clothing. I am apt to keep their attention with promises of wild sex but whenever I stray to another subject or show that there just may be more to me – silence. Call me a hopeless romantic, but I want it all. I think I am done with the hour-long relationship!

To give you an even wider idea on the depth of the deception of this method, I did meet one guy at a restaurant with high hopes. He knew about the wheelchair and my status (I am always very frank in my profiles) and when we finally met in person we had a lot in common – joked and laughed. Plus he was a handsome forty-seven year-old guy with a career and he told me I was handsome. So, I was confident about this one. I should have been wary of him when after meeting he said to me about there’s more to me and that he liked me; his original thoughts about me were wrong. So, I guess that meant I was more than a sex thing which meant personal work. But the relationship or whatever you wish to call it, fizzled out more as I wished to talk of other things than sex. Sadly, I don’t think he was looking to date and I was not looking for no-stings sex.

So, I added to my profile, “Just because I say ‘hello’, does not mean an instant marriage proposal.”

Another very adorable guy in his mid-thirties (that age makes me wince to be honest unless they can back up their mental stability and maturity with the right words) said he is a very spiritual man and has adapted his homosexuality to his religion. He is also positive. OK, I was intrigued by his spirituality and his look. Yet again though, the connection seemed sex was an underlying issue and the conversations waned. I felt as if he wanted to be rescued.

Not all guys I have met initially online in the area have been without note or substance. I have had wonderful lunches and phone calls with guys accepting of the wheelchair and my HIV status and also the fact I want to take things slow. I can count them as friends for a good laugh or someone to vent to without feeling obligated. I think that’s the best word – obligated. In a way, I am more of a prude now, more afraid of the entire intimacy thing; so I keep my distance and remain cool. I have to wonder though, “Am I being too cool or too worrisome about my HIV?”

One case in point involves a very nice man who felt that waiting was too aggravating, more so than the HIV thing. We had been very open about the entire issue being that he was negative. Again, maybe too open because a few weeks into our “relationship” he felt the need to date another negative guy AND tell me about it! It was almost as if he was throwing down a gauntlet. I kept calm and asked him he had been safe. His answer was basically that they did not have to be since they were both negative. I reminded him that telling a lie is easy and retorted, “I can’t do this again.” He was confused by my stance, so I explained that God forbid, if he gave him some STD, it would wreck havoc on my system and I was not about to allow that to happen. To bring you to the finale of this condensed soap opera – we went our own separate ways.

I can go on and on about the men I have met online the past few months: some are down right stupid and nasty (and younger) for no other reason than self-loathing; others are nothing more than mindless sex machines unconcerned with consequences; and then there are those that give me hope by just talking and being a friend.

Oh, and in other venues while I am shopping or eating in a restaurant: the men are all smiles and flirtatious while I am at the table or behind a rack until they see me in a wheelchair. I can almost see the “pfffftttt” as they run for the nearest exit. And those that talk to me, more or less, feel I need them – like I am desperate or helpless and they are doing me a favor; which is worse, I do not know. Those scavengers that haunt the men’s rooms see me as helpless and are surprised when I give them a look of disdain and wheel away with my head held high. To me, they are the desperate ones!

I think I may have a little bit more to deal with when guys back away from the wheelchair like they have seen a skunk. And to have them almost trip over their feet like the hapless, stammering victim in a slasher film trying to get away when I add HIV to the combination.

I am thoroughly amazed when talking to friends or even the men online about the bars, clubs or chat rooms – it seems not too many men are concerned with getting an STD. Maybe I am being overly sensitive now as my intelligence is ruling my libido now because of the HIV. I am so concerned when I hear of so much apathy about STDs and HIV by the “younger” set. But even the “should-know-better” guys act un-phased by risky behavior and seem not to care.

Silly me, I read too many romance novels when I was younger and still gravitate to those stories and movies with implausible love affairs!

I am nearing fifty and I still dream.

I had my doctor appointment, October 1, 2008 and I received wonderful news today. My T-cells were 853 – up from 498 in June and I remain undetectable in my viral load. 853 is my all-time high since being diagnosed almost nine years ago. The only disappointing news was my cholesterol went up and I have been given until December 22 to try to adjust my diet and see how that works before reverting to medicines. One particularly funny thing is that both doctors are hell-bent on making sure I get my colonoscopy and have a prostate exam – I have to remind them smiling, “I won’t be fifty for another month, so relax!”

I have had a very aggravating time with my new Jazzy so I returned it August 6. It was making like a “chirping” sound whenever it went forward since the middle of June. I tried to have it fixed but the company did a 180 degree turn in a matter of two weeks and told me basically it was my imagination and that sound is normal. I beg to differ. I have had a Jazzy since 2002 and it never made such a sound, so I finally gave up arguing with them and went directly to the manufacturer who sided with the distributor by just reading their report. The manufacturer is only ten miles from my home and they never sent a technician to even look over the unit. Needless to say, I got totally frustrated and returned the unit. Even the guy that came for it was confused as to why the technician said the noise was normal. When I told him that the first technician wanted to change a motor – he agreed. The company promised to reimburse my insurances which they finally did September 15. I am so aggravated from the entire situation and on top of that – the reimbursement was made but it takes forty-five days for it to show up in the system. As of now, I am using my original Jazzy which was refurbished back in April and so far it is running fine – knock on wood. I have to hope it continues to work until then. I cannot believe the circles of deception I have been through lately by the old Jazzy company, the new one and even the manufacturer. And, to top this entire situation further is the un-concern of my insurance to help. I have explained over and over that needing a power chair is my quality of life issue – I use it every waking hour to do my daily tasks and not just because I am too lazy to walk while shopping like so many so-called “disabled” people. I am so frustrated so, enough for now.

I have been re-doing the book since I sent queries out in 2007. Some suggestions were made regarding the format and I decided to try them and finish that process by October 1 which I did the day before! I will start sending queries out after November 1 which is my personal deadline to finish going over the book making adjustments. I have given myself all of October to get it ready.

I am totally into watching, True Blood on HBO. It is a very sexy show about vampires. It’s a good mix of everything but it interested me enough to order the Anne Rice books through Amazon. They will be my next books to read aloud. I guess I never outgrew my curiosity of the forbidden love thanks to Dark Shadows – remember that show? I guess I never overcame my obsession of sexy and romantic ghosts and vampires.

Arlene bought a new car – a red Pontiac Solstice. It is a gorgeous looking car and it is hers alone now. She hasn’t had her own car in years so this is her “toy.” It is a very sporty convertible and it’s something she’s always wanted.

I have rearranged my bedroom. I got rid of a free-standing shelf unit and my big clothes hamper to get rid of some clutter and giving me more room to move some things around. I have put my walker at the side of my bed which will give me easier access to it. I want to start using it during the day for simple walks to the love seat to write, read or watch TV. I am hoping it helps even more with my balance and walking. I think the whole power chair issue has made me wish to not rely it for everything and also I am cutting back some things (mainly outdoor projects) to keep it in working order.

I think I’ve discovered a new ailment like tennis elbow. How about Frisbee arm?? LOL
I noticed my arm is aching more and more but only if and when I throw the Frisbee for Shadow. It isn’t bad and I don’t plan to stop playing with the dogs but I think it is an amusing thought..

Ever since I won at the Pennsylvania Lottery with a decent amount – only four figures but I’m happy, I keep playing hoping for a replay of my win. So far, a bunch of free tickets, $4.00, $10.00 and even $25.00 – I’ll take it all because every little bit helps and I never know!

Well, the next update won’t be until after the Holidays so I am sure there will be a lot to write about: Halloween, Thanksgiving, Hannukah, Christmas and New Year. (I can’t believe the store have Christmas things out already!!)

Promise - more BLOGs to follow!!!!

Be well and hugs,

Ron

I haven’t been writing much these days because it just seems everything has conspired to take the wind out of my sails – a perfect storm of seemingly diminutive events that just got a hold on me all at once and the end result - lack of interest in so many things.

So, I will begin with Part 1 which has a lot to do with memories and tears. Tears of melancholy of my past – childhood.

My Aunt Grace, or Aunt Weenie as we called her, has been battling Alzheimer’s for the past two years. It has been ever so unrelenting in chipping away at her memories. Even last year at a family picnic I could see she no longer recognized me which stung even more when I thought of all the aunts, uncles, great ones too, grandparents, great-grandparents, cousins and in-laws that have passed before: accidents, diabetes, heart attacks, Alzheimer’s (again) and old age. Gone were so many of the family members who were always in attendance at our gatherings of the 1960s mainly. I could just close my eyes and reminisce about our family picnics in our rather large yard or our cookouts at a nearby lake complete with boat rides.

I remember:

Root beer and birch beer on tap for us kids in big metal tubs wrapped in old hand-made rag carpets to keep the ice blocks from melting fast.

The old portable outdoor sink to rinse the glasses – remember highballs?? I do.

Fireworks before so many became illegal.

Polkas – weddings used to be so much more fun back then too!

Hide and Seek with Uncle Vince.

Ann doing a hula dance in the yard in the fake purple grass skirt one of my sisters used for Halloween.

Garden hose fights with my father which usually wet most of the slower relatives.

Aunt Weenie went into a nursing home about a month ago when she kept falling and refused to walk anymore. She didn’t recognize her husband, our Uncle Billy, now either.

To me, Aunt Weenie and Uncle Billy are the last two who were always at a family function back then when family stuck together and had found fun in the simplest of yarns, practical jokes, gags and harmless pranks. A chapter in my life is closing.

What made this yearning for old days even more wounding recently was the addition of illnesses of both my parents.

My father has had heart problems before which he fixed with stents, catheterizing and even a triple bypass a couple years back. Now, his lungs keep filling with fluid and he has been hospitalized three times recently. The doctors are not willing to perform another major operation but will give him a defibrillator/ pacemaker to regulate his heartbeat better. They say his arteries are too calcified for any further invasive surgery. So, between this and his new medications, he’ll have some time. This will not be a long term solution. He wants so much to be active even at 81! Oh, and he has gout which has deformed his hands into knobby, almost useless tools. I look at this frail man now and think back to when he was younger when I was a child. He was a stocky, muscular man who was always gardening, doing yard work and had a home-repair or improvement project going. This has got to upset him being so confined by his afflictions now. It is very clear how unhappy he is when he sometimes tells someone that he was happy with his life and if he were to die tomorrow – he’s ready. But, are we, his children?
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Now, my mother, who at 77, has had her battles over the years with Type 2 diabetes, a weight problem and low-grade emphysema had to be tested for a back problem. In the course of this, we were told they had found a mass on her left kidney and there was a 99% chance it was cancerous. They said she would never survive the operation and/ or recovery because of her weight and have given her one to five years depending on the growth of the cancer. But,, the doctors were quick to add that she might die of a heart attack from her weight even before the .cancer gets her. I guess we’re supposed to feel better!! Her back problem? They found deteriorated disks which would require injections because an operation was out of the question

So, you would think all the children would pitch in. My father and mother had eight children (four boys and four girls) before they divorced and my mother had one more (my half-brother) when she remarried. I only can vouch that four of us, three sisters and myself – the gay one, seem to be doing the majority of the care and hospital visits. The eldest brother and the half-brother only help when thoroughly cajoled by the three sisters and very reluctantly and minimally. Me? I have no use for any of my brothers, the one sister and the half-brother. Alright, I can excuse one brother for he is barely supporting a wife and child, and he calls – sometimes. Well, at least he calls every now and then. One brother and one sister never call them.

So, the majority of any offer of help to my parents be it going out for dinner, getting a prescription, going grocery shopping or a doctor appointment – falls onto the three sisters and me.

And, I hate that I am limited because of my wheelchair but am thankful that I have the mini-van now and can help take them where they need or want to go. But then, I do help with the phone calls and researching on the Internet.

One project that I have begun investigating recently is having a wheelchair ramp put onto my mother’s house. This is very emotional for me because it is the house I grew up in and never imagined to have to put a ramp on it. My reasoning for this addition is that I can get into the house now and help with the cooking and cleaning. My role of caregiver will increase for my mother now and hopefully alleviate some of the hardships from my three sisters.

On that note, my father already has a ramp because of his now deceased second wife and he is very mobile – more than he should be!! My big contributions to my father recently are taking him to dinner, church picnics and errands. He loves to visit with me too!

At night, I go out to the deck on the front of the house just to look at the mountain and my mother’s house about 100 yards away. (My mother sub-divided her property so my place, my sister’s house, overlooks hers.) I look at the very clear star-filled sky or the moon, then watch the fireflies and feel my emotions begin to swell. I remember so much, too much, of simpler days when we had family picnics here or at a lake, spent an evening chasing fireflies (and capturing them in old mayonnaise jars with some grass in the bottom), went bike riding, swam in the river or a creek or a pond, built forts from snow or ferns, sledding, having a garden, helping with the canning (I still remember skinning the scalded tomatoes, cutting beans and helping make pickles), and on and on.

There is so much the younger people (my nieces, nephews and their children) missed out on and it hurts when they cannot understand the reasons for my discomfort and sadness when I speak of the “old days.” It is a sad ending for me.

Next is part 2 coming...

I had my appointment today – CD 4 is 598 and viral load still undetectable. Last time my CD 4 was 627 and VL undetectable. My doctor was happy that the viral load has remained undetectable so long – almost 7 years. My T-cells are at a good level and she is no way concerned because the VL is so good.

My Mini-van is running well. I just had it in for a full service and an inspection so all is good. I did take a trip to Honesdale, PA – about an hour and 10 minutes ride north of the Pocono Mountains. What a nice town!! Small, but busy it seemed with all the downtown shops open and I saw very little ‘For Rent’ signs either. Very clean and picturesque too. I visited friends and we spent a great afternoon in the central city park – fountain and all. It is an amazingly pretty town – definitely a hidden PA gem!

I had a very funny episode with my dad – he’s 82 mind you. Well, about 3 weeks ago we were going out to dinner and I was driving of course. I have On Star on the overhead console which also has a hands-free cell phone – I rarely use driving – eeek! My sister needed to find out where we were going and called the van. This amazed my dad too! I would just talk to my sister in a normal voice, maybe tilting my head up a bit. My father wanted to tease my sister too, but out of the corner of my eye, I could see my dad bent forward, yelling into the door stereo speaker! I thought I was going to lose it to laughter and making it even funnier was my sister asking, ‘what’s he saying?’ Between chuckles I tried to explain to Dad that the speaker for the phone is on the center roof console and not the door. We still laugh – well, my sisters and friends.

Dad was in the hospital about 1 ½ weeks ago for his heart which was acting up, but nothing serious but the night he came home (he was in for 3 days), he asked me if I wanted pizza and wings for dinner with him which made me shake my head and chuckle but then he totally floored me with – did I think he can have a beer? We all had to laugh because he wasn’t even home 24 hours! I told him that I think he should wait.

I have been trying to do more things at home with the price of gas being so high. I keep myself amused by weeding and planting around the yard. I have been kicking around some ideas and if I think it is easy then I’ll bring it up to my sister here.

I did get a hanging basket of tomatoes to try my hand at gardening. Good, so far but I do have a funny story about the female dog here – Shiloh. She thinks any ball is her toy to preface this story. One of the tomato plants got bent from being bumped, so I pinched it off to save part of that plant (there’s 5 in my pot). Unfortunately it had a green tomato maybe as big as a ping pong ball, so I picked it off and threw it into the weeds and Shiloh went looking for it. It was round, right? Hers, then! She played with it for maybe 10 minutes before biting down on it. The look of total disgust was priceless! She kept licking like EWWWW! Even funnier, she would snort and sneeze as if that would help her get rid of the taste!

I am seriously considering a veggie garden next year, but how to do it and where???

I have been trying to spend a couple hours every day, writing. I have been going over my book once again flip-flopping some parts and just going over it. I did send it to numerous agents in hopes of finding a publisher a year ago. I thought before I send it out in another attempt – I am going to revamp it some. So, that should help keep me busy.

My exercises have pretty much remained the same other than the doctor advising to stick with the more low-impact which is probably 90% of my routine anyway.

I had to change AIDS groups because of consolidation. I went to another council so we’ll see if it’s any better – they made a good case and really want me to participate in their support group. I said I would try it but honestly told here that I do not want to hear only whining and negativity. To me it is very different when someone says – this is my problem, what do you all suggest I do?? THAT is having a positive, can-do attitude. I will see how it goes.

I did get a new Jazzy (power chair) from the Scooter Store. It is nice to have the newer model which has a lot of improvements and more amenities like zip!!

My next Update will be in October of this year, so hopefully I will have even more to write about then!!

Ron

Life’s happenings has trumped my HIV – mostly

I cannot decide whether I like it or it sucks.

I have been keeping myself busy with so many things.

First, I had March that heralded spring. St. Paddy’s Day was quiet though and I focused on Easter because I was going to cook for my parents – being a dutiful gay son. I had started exercising and eating right soon after but again my back began bothering me. So, I went to my doctor and also spoke to a therapist who both told me I was pushing myself too hard with trying to walk. Too much, too fast. I was told to concentrate on lower stress, low-impact and cardio exercise and therapies. So, I have been re-working some of my more demanding exercises with more rides on the stationary bike, less stressful parallel bars, calisthenics and Pilates routines. I still use my rolling walker every day too. But now, I try to use it more to do little things to help build up strength in my lower back and stand to do everyday chores like dishwashing. I am determined to lose another 10 pounds and to build up stamina to walk – even if it’s only with the walker! Setting a more realistic goal has been harder for me, but it is the smart thing to do.

I REALLY hate the idea of spending the rest of my life in a wheelchair!

The weather has been much better here especially in April so I made sure to enjoy the sun and warm weather. I was able to sun bathe a number of times which I liked a lot. Oh, I know the health concerns. But, I always use sun block, never allow myself to burn and limit my time to actually lie in the sun to an hour and a half each day at the most. I try to be smart even when I love doing something that many say are bad for you. It makes me feel wonderful and reminds me that I am not dead yet. So, I don’t act like I am.

The sunnier weather has given me added ambition to do house cleaning chores that I have let go for the winter. And, yes, from my power chair too! I have done so many of the hated or un-thought of projects from wiping down kitchen cabinets to shampooing the living room carpet.

The warmer weather has inspired me to exchange my fall/ winter clothes for my spring wardrobe of shorts, Ts and short-sleeved shirts. Of course, with the past few days as April ended, I was glad I kept handy a few sweatpants and heavy shirts! I even cleaned my room for spring, changing my bed spread too, to a lighter, more summer-like weight and look. Well, for the 2 weeks of 70s and low 80s, it all was a fortuitous change, but lately, hardly – thank God for heat!

Speaking of gas – whether for heat or my mini-van – what sticker shock as it continues to climb. I find myself being so much more frugal in trying to stretch it. Thank God/dess, it has been getting warmer and sunnier and less heat has been needed. But, for sure, I plan to be a bit smarter when it comes to the air conditioning later in the summer! My driving has become an all day event out for groceries, dog food, dry goods, pharmacy, etc. to make one big trip every few days. I ask my parents if they need anything too, so I can pick it up for them as I go to do my errands.

No more just going for a joy ride or going to pick up one thing anymore! BUT, I am still planning my road trips to New Hope/ Philadelphia and New York City.

I have been reading up and catching up on different comments and BLOGs on AIDSMeds.com and today I had the funniest comment every posted to one of my posts, “More than a wheelchair; more than HIV”. I was told that by using ice compresses on my head daily that I would be cured of my PML and, as an added bonus, any “immoral gay thoughts!” THAT made me chuckle – I am sorry, but I do not see myself as an immoral human being!

In March and April, I decided to be more pro-active in meeting men via Internet. Well….

After a concentrated effort to connect with gay men, I was able to garner a few very good and nice pen pals both HIV positive and negative, of all ages. But, along the way, Lordy – some of the guys are just on there for sex – big surprise, right? Not really. What did surprise me was the number of men looking to “discuss safe sex” or not even disclosing their status at the very start. I would be worried not to. I am more afraid if they are truly negative or of other STDs. And, the other amazing thing is how guys will still believe a partner who claims to be negative or clean without a second thought.

Other than being a cyber hussy, I became a sympathetic ear for some and I felt good being able to help an indecisive guy or a guy just down and out. I am good at being uplifting!! I am also grateful some guys bestow their life’s lessons on me or impart some wizened bit of advice.

Oh, and I voted for the first time. I voted in the Pennsylvania primary on the 22nd and I will only confirm I registered Democrat and voted as such. I don’t want to start a big debate on which Democrat I voted for, but I am sure most would agree – 8 years of Bush is WAY too much! I had to vote if I am going to complain! HE HE

Sadie – January 12, 1994 to March 3, 2008

Sadie had to be put down on 3/3/08 after a series of strokes incapacitated her earlier that day. Sadie was 14 years old – 98 for us – and I hope had a good life.

Sadie was born on January 12, 1994 and I got her in early March on a whim after I saw her at a pet store in Paramus Mall. A buff-colored cocker spaniel. I totally fell in love with her exuberant attitude – she was playful, curious and loving (a total suck-up) and I fell for her big brown eyes too.

My ex wasn’t too happy when I did buy her – so much for having “children” I would think. So, I purchased all the necessities she needed and took her home to my apartment in Manhattan (Chelsea).

I did not have a name for her right then because I felt it had to suit her. I kept mulling over ideas until I started leafing through my address book in a final attempt to find the right name. And then I found it, Sadie. Sadie is the name of a woman at my office. She was also very animated, with a heart of gold – and also had big, brown eyes! That was it then.

Anyway, I kept Sadie with me in NYC for 4 years. Trained her to go for walks (she was a total hunk magnet!) and did all the correct, right things like having her spayed and getting all her shots. Sadie would make me laugh because the vet was a hunky guy with a deep voice and every time we went, when he came out to get us, he would bend down to pet her saying, “How’s my little girl?” Sadie would just get all excited and pee. (I know how she feels! And, my friends would tease me endlessly)

Sadie went to the groomers every 4 weeks and had a bath every Saturday in between visits but never peed on the floor!

Sadie slept on a towel on my bed next to me almost every night. My ex would hate it when he spent the night and she would bounce onto the bed and happily squeeze between us! When I slept alone with Sadie alone, she would awaken me with her loud snoring. A few times, I would be groggily thinking in my sleep-dazed state, “Is someone sleeping with me?” Once, I realized Sadie was snoring, I would go back to sleep relieved.

We had a routine of going out at 5:30 am, 5 pm and again at 11 pm every day and made a game of racing to the lobby from my 4th floor apartment. On one 5:30 am walk, Sadie gave me a good belly-laugh. Sadie always explored every nook and cranny of the sidewalk and fenced-in tree and/ or bush. And, in the morning, an empty parking spot was an added bonus which required her undivided attention. This one day, Sadie was intently sniffing this empty parking spot between two parked cars. When, an in-line skater with an aerodynamic body suit, pads and helmet whizzed by, it startled her. Sadie jumped straight up into the air like a 4-legged character from and old cartoon – BOING! I never laughed so hard even when I had to pick her up to calm her rattled nerves.

I will admit, I spoiled her with squeaky toys, chew toys and treats like Snausages and Bacon Strips and rarely gave her any table food. Sadie was smart. She knew the names of every one of her toys – but her favorite was “Kitty” – a latex rubber toy in the image of Sylvester, the cat from Looney Tunes. I used to love showing off her intelligence to company and would love to see the looks on their faces when I would tell Sadie, “Get the dildo!” The “dildo” was a bone with nubs all over it, which supposedly kept tartar at bay. But, their looks!!

My best friend became, “Auntie” so every time he came over for a visit, he’d start yelling at the elevator, “Auntie’s here!” And then, Sadie would go into a wild frenzy – running madly and jumping from sofa to love seat - until she did see him – and when he’d pet her, she peed!

I took Sadie with me on trips home to Pennsylvania where she charmed my family and friends from the area. All were amazed when she would pick out her toys by name and do some other tricks she accomplished.

When I got promoted to VP of the division and had to go on business trips, at first I had my best friend come to baby sit Sadie. He didn’t mind because he lived on Staten Island and enjoyed a night or two in Manhattan. My other close friends pitched in when he could not baby sit Sadie. My trips were maybe every two weeks, but as our business grew, the trips became more frequent. I began to worry about Sadie and the fact that I could not be asking my friends to stay all the time. I had to do what’s best for Sadie and, me. I would worry because even though my friends were good with Sadie, it would not be me. I’d rather she came attached to someone in my family. My mother was my choice. Because she had a big piece of property in the country and at that time had been living alone, Sadie would have her space and my mom, the company.

I had to make a decision to leave Sadie with my mother that Christmas of 1997. So, when I packed, I also gathered up Sadie’s bed, dishes and toys – including “Kitty.”

Sadie was part of my heart then and when I left her, I cried like a baby at my mother’s house, in the car back to Manhattan and at my apartment, my quiet apartment.

Sadie and my mom bonded over the years that followed. And, for years after being with my mom, maybe another 4 years, Sadie still had “Kitty” and knew the toy by name! Of course, when I visited, Sadie jumped and carried on whenever she saw me.

I will never forget when I came home in February 2000 in the throes of my PML and at first I was put in my mother’s house – in the living room where they had put a hospital bed. I remember Sadie trying to climb up next to me and I could barely push her away because I had sunk so low that I hated the feel of anyone or anything near me. When I was moved to my sister’s house, I didn’t get to see Sadie for a year until we had moved next door to Mom and I had recovered enough to have my brother wheel me over to my mom’s yard.

So, when I did get the power chair, on nice days, I was able to cross our connecting lawns and visit with Sadie and my mom.

During a big family cookout about 3 years ago, my family invited my best friend from NYC and we went over to my mom’s place to see Sadie. Would you believe that she still remembered, “Auntie’s here!”

Well, about a year ago, my mother noticed Sadie’s hearing was getting bad. Old age, we agreed, she’s 13. About 6 months ago, we believed she had gone completely deaf and my mother happily told everyone how Sadie learned her hand signals!

About a week before Sadie died, my mom thought her balance was off and had her checked at the vet’s. All her blood work was good and other vitals too, so that calmed my mom down. Until about 2 am on March 3 when Sadie would have a seizure – one right after another – so my mom had one of my sisters go with her and Sadie to the vet.

We all knew – she wouldn’t be coming home

I was very forcefully reminded by one of my sisters, the one I live with; the one I’m closest too, when at the end of a phone conversation, she remarked, “I don’t think people really understand what you went through and what you do now.” I wonder if “forcefully” is the right word to use, but it was like being snapped back to reality; the reality of how people, even friends, view me.

She ended our phone call with it because we were catching up on our week. She and her husband travel a lot for work and have been on the road since January 7. We go through our checklists: bills, parents, siblings, the dogs, the weather, my most recent projects or phone calls and just plain old gossip!

Her comment was in response to a conversation I had with friend of mine – HIV negative, living in Philadelphia – with whom I just reconnected. His first lover had passed from AIDS 12 years ago and he was seeking information on my PML, what it did to me and how am I managing now. He was curious as to why I wasn’t walking – if the muscles in my legs had wasted away to the point that I can’t walk. I chuckled at his question and laughingly told him, no, that I could probably break a horse’s leg if I kicked it. (Jeesh, I wonder – how much can I press with my legs now?) I explained my bout of the PML and how it wrecked my balance and coordination back in its fury.

I told him since early 2001, I have been religiously doing my stationary bike almost daily and that added with parallel bars, calisthenics, Pilates and my walker; leg muscles are not my problem for walking. In fact, I am more fit with more muscle than when I was 25. My balance and coordination were and remain the problems. In the beginning of 2000, I couldn’t even sit up and when I did lie down, sometimes I felt as if I was falling and, my coordination – gone from my legs, first; then my arms and hands. But, then over time and constant therapy and exercise, bit by bit, I was able to regain parts back and thus, that part of my life.

So, my victories from late 2000 to now are endless to me. First, I learned to sit up again, then onto feeding myself as my balance and some coordination began improving. My mind began to wrap around the idea that I just may be around for awhile as my T-cells climbed and viral load kept dropping (I’ve been undetectable since July 2001).

I really didn’t push myself or have any ambition until that same sister had me go to an intensive in-patient rehabilitation center for 2 weeks: physical, occupational and speech therapies. I don’t know why that place motivated me so – maybe seeing all those other people with disabilities, especially the more youthful ones - children fighting something they had no control over; accident victims and even addicts who fried their brain. But, I always say thanks to her.

I began wanting my independence back when I returned home, so I began working on things myself and through some energetic home therapists. I began practicing my handwriting for that and my fingers’ dexterity; I began reading aloud to clear up my voice; little things to make me feel normal again. I began an honest attempt at a parallel bars and calisthenics routines too.

Personally, I felt like the world was paradise when I finally was able to go to the bathroom unattended! (Like a toddler all over again HA HA). Little by little, I re-taught myself to shower, shave and brush my teeth using determination, some ingenuity and handicap accessories suggested by helpful therapists.

As my strength returned, so did some of my balance and coordination. It was a little bit of a surprise to me, to begin re-gaining coordination in my hands and arms and my sitting balance first, since they were the last affected. I eased my mind by telling myself that they also had the least amount of damage done. Good opinion, I think!

I got to the point that I didn’t need a companion to do the cooking or help me with my daily regimen – I felt great! Now, I could be ALONE! Ahh, blessed quiet to reflect or imagine – to be lost in my own mind in peace.

I continued to improve and further pushed myself by added therapies and my own gumption to try things, anything, that might help me get better faster. I kept increasing my time on the bike and with the help of friends, added to my calisthenics. To keep me from boredom, I began getting all kinds of books to read aloud and got a Spanish Level 1 book for my handwriting practice.

My sister got me into using her computer, so I began contacting old friends and co-workers through e-mails – lots of e-mails!! Typing was a tremendous therapy for my fingers and I then began writing a book because it is something I always wanted to do and now I had the time. (After 3 re-writes, hopefully it will be published soon.) I enjoy writing which can use my imagination or memories to create such a work. In a very odd way, if I had never gotten the PML which sidelined my old life, I wouldn’t have had the time to write. I have even begun a second book.

I was always trying things to help my standing balance and my core, so I tried an exercise ball, Tai Chi and Pilates. I would add exercises to the parallel bars and spent more time on my walker. I am adamant about therapy as an out-patient at a nearby rehabilitation center. I make sure to do whatever time my insurance allows every year, hoping I improve more or learn something new each time. I enjoy water therapy now the most and feel it accomplishes much more.

Well, now I focus on my standing balance and the coordination in my legs in 2008 – trying to build up my stamina for walking. I have incorporated some things I learned in Pilates and Tai Chi into my calisthenics routine. I try to do as much as I can each day, very mindful of the strain on my back. Over the past 2 years, I have suffered backaches every so often because I get over-zealous in my quest to walk.

My Philadelphia friend was amazed that I did all the Christmas decorating myself, can clean, can cook, etc. and asked me how I managed all this from a chair. When I told him that I can stand, he asked incredulously, “How?” Since my power chair weighs a lot, it makes a very useful brace. I just use it to place the backs of my calves against it for added support, and voilá, I can stand! So, I can do things within arm’s reach when standing: decorating, dusting, putting dishes away or getting them, etc. I rarely think of what I cannot do, but rather, how can I do this? My improving standing balance allows this feat and even short periods of total free standing!

We chatted about how I re-write all my lessons in Spanish or French now to keep my handwriting legible and alleviate my boredom of such a trivial yet important therapy. I regaled him on my getting a paint-by-number painting with very small and varied spaces to fill in – this would help me even further in my control of a paint brush, and my patience, because I hope to attempt a new painting soon.

He couldn’t believe that I was driving again. I told him that it was a goal. I also really wanted to have some of my freedom back – meaning not having to beg or hope somebody’s schedule allowed them for a ride or to do something. Now, my only worry is the weather.

So, I guess I am a determined individual with a very pro-active view of life constantly challenging myself mentally and physically.

But 8 years later, I am still in a wheelchair and doing everything possible in my life: showering, personal hygiene, cooking, cleaning, playing ball with the dogs, shopping, shoveling snow, raking leaves, sunbathing, road trips, art projects and small home projects!

Most people only see the wheelchair and balk, and those that can handle the wheelchair usually scamper away knocking down small children and pets when I tell them about the HIV. Some people show compassion and talk to understand further. The most inquisitive – children, teenagers (surprised me too!) and the elderly.

HIV – (sigh)

Gay men smile, but the sight of a wheelchair weeds some out immediately and if we manage to talk, the HIV tends to finish the weeding process. In keeping with the gardening analogy, what are left are those precious few beautiful human beings with fantastic souls and warm hearts.

The only thing worse than meeting a guy in person, is the Internet – oh, yes, those wonderful gay or POZ sites where you might connect. I won’t even have to name them – I’m sure they are well-known. I really would like to connect with someone and I really plan on trying even still but I have to say one thing – hypocrites. Such hypocrites, and some of the worst are the HIV positive men who really should know better, but hang onto their outdated self-important views and I will elaborate before I get blasted for being overly sensitive and lashing out. I really just want gay men to be truly honest with themselves – look inside and if they are not what they say – don’t write or say it. If all you want is superficial gift wrapping with no real substance, put it out there!

The men all say how friendly, intelligent, romantic, affectionate, outgoing, honest, caring, empathetic, spiritual, loving, passionate and so on that like cooking, art, books, music, animals, children, laughing, having a good time, etc. etc.

Oooo, and their best features: eyes, smile, heart or personality!!!

And, ooo, ooo, they value friendships, love and laughter too!

BUT, I absolutely love the guys (POZ too!) that claim they treat all people they way the wish to be treated, try to do something nice everyday and believe that life is
a never ending challenge to try and improve oneself, to self-educate, to learn more, experience new things, and broaden the mind.

We all can roll our eyes here. I can gag from reading and hearing this nonsense over a hundred times and I am sure I will continue to hear or read it because I will continue to believe that there are good people. Just, believe.

I do know there are men out in this world who are truly what they say and I found a few, both negative and positive, handsome or not so handsome, athletic or average or chubby – but they have something so special – beautiful souls and hearts.

We write and/ or call each other to vent, laugh and learn. Those that are close enough, we go shopping, have lunch or dinner and just have a great time. We chat about everything, never mind that I am not their idea of a perfect match nor they mine, but discuss life. We learn a lot from each other and I am glad that there are those who challenge their mind and heart to appreciate life. They truly understand how I view life from a wheelchair and my HIV/ PML, so I feel that not all is wasted in my quest for honest behavior.

I have learned from these men that I am more than just a wheelchair, more than just HIV. So, when un-intelligent, thoughtless, nasty remarks do come my way, or that awful silence, or that look as if they just had seen something hideous – I remember that not all people, gay or straight, are made the same inside.

I still believe.

Sappy, huh?