After losing count ot the unanswered phone calls to my brother, he sent me an email this morning saying that he \\\\\\\\\\\\\\\\"didn't understand why I hadn't been down to see mamma\\\\\\\\\\\\\\\\"…It struck me anew just how much of a communication disconnect there is between my siblings and myself…I took a deep breath and wrote this response to him. For good measure I included my sister who also just doesn't get it, that my life is different from theirs and has been for years…I copied and pasted this e-mail in hopes that it might help someone else who is going through a similar situation…By the way, don't feel sorry for me, feel sorry for my family!……..Loki
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Dear Sister and Brother, I haven't heard from you much since the day of Mom's surgery. I understand that you have had your hands very full Karen, and that is totally understandable. Rich, I'm know that you have been juggling a huge share of the burden of moms situation besides your day to day work…
Just so you know, I try to call her every day and sometimes twice a day. I also notice the difference in her ability to initiate or carry a conversation. I think that this most recent episode of general anesthesia has hit her pretty hard. She has however started picking up her phone again. The people there are pretty good about getting her to her phone if she isn't near it when I call.
I don't know how to make a smooth segue into this this so please understand if it comes across as blunt. I try not to broadcast my health issues or our financial condition for the world because frankly, it's nobody's business so I would appreciate if you would keep the following to yourself. Here it is in a nutshell.
You both know I've been dealing with H.I.V. for the last 24 years. I haven't made this a secret from you Rich, or Karen. Mom has known for a long time but I'm pretty sure she doesn't remember that now and for that I'm thankful. I have gotten into such a habit of putting a rainbow on my health for mom and everyone else for that matter , that it's become second nature to downplay it. When uncle Dick had cancer everybody in the family circled their wagons around as most family's should. For that matter whenever any family member has had a critical health issue it has been the same.
As I said , I have been dealing with H.I.V. for 24 years; a chronic infection that has killed probably 98% of the people who contracted it in the early days. Many of these people were my friends. I've spent the last 23 years of those years wondering when my time would be up and when my immune system would finally cave in. For some reason,the doctors say that I'm one of the rare cases of "slow progression" to full-blown A.I.D.S. I went onto disability back in 1995 when my job of 11 years ended and the stress of it did a number on my immune system. Since then I've been doing everything I knew how to keep my system afloat…Everything is, except starting HIV meds.
To do a fast-forward on Aids research: In a nutshell, there still is no cure…Up until just about four years ago, most of the drugs that they used to treat H.I.V/a.i.d.s. were as bad as the virus itself..I will add here that most of the people who die from complications now days, don't die entirely from the virus, but just as often of liver and kidney failure from those earlier and even more toxic medications. A lot of people don't understand that HIV medications were, and are in fact CHEMOTHERAPY. Chemo is just a term that most people associate with cancer treatments, but in fact, it includes any ongoing therapy that involves just that : Chemicals.
I waited for as long as I possibly could without starting meds, gambling that by the time I absolutely had to go onto them, research would have come up with a treatment that wouldn't kill me while killing the virus. Last year in August of 1998 It was time. In actuality, it was past time because the year before, I had already lost the eyesight in my left eye from an O.I (opportunistic infection) that is common in people with compromised and damaged immune systems. My t-cells ( they are a type of white blood cell that normally fight infection but are killed off by the HIV) were down to double digits. The normal range for cd4 t-helper cells is in the thousands, and mine had already been into the mere hundreds for nearly 20 years. I very nearly overplayed my hand by waiting so long.
By the time I started HIV meds in 2008, I had several latent infections that were going on that my body didn't even know were there..When the antivirals ( HIV meds) began to supress the virus, I went through two or three months of living hell as my body went through what is known as 'immune rebound response". That was basicly where my immune system was coming back "online"…or waking up in a manner of speaking. My body was dealing with two things: Trying to adapt to a combination of three new and vary toxic drugs, and as it did , waking up and cleaning house so to speak. My immune system had actually "learn" again how recognize foreign invaders and get rid of them…It was a really torturous process and one I don't know I would have gotten through if not for Adams support. He never left my side and it was so very hard for him because he could do little but be there with me, dealing with my hallucinations , nights sweats, and initial allergic reaction to one of the drugs. It was, in a nutshell, UGLY as my body began to rid itself of 23 years of accumulated virus and bacteria.
A year and a half into the treatment and it seems to be "working" I guess you could say…I did manage to put off taking HIV meds until the latest family of drugs hit the market and they appear so far to be the least damaging. But they, like most other powerful drugs aren't with their down-side. In fact, a couple of the drugs I'm on are so new they probably won't know their long-term effects for years to come…That is the price of fast-tracking these drugs onto the market place. People have been desperate and they demanded that it be so….Also there is the fact that the drug companies have MUCH to gain over the production of these drugs. Their research doesn't come from a totally compassionate place as I'm sure you realize. It is also big money.
But in any case, I seem to be "better" , at least that is what the blood work says. My viral count dropped to what they call " undetectable" which means that even by the most cutting edge tests they have today, the count is so low as to be called un-dectectable although it is still there. If I stopped meds, chances are it would rebound in a matter of months. My t-cells took such a hit in the previous 23 years before treatment that they have not been so fortunate in the rebound…T-cells do not just magicly reappear once the virus is in check and part of this is because of the damage virus did to my immune system. At least I don't seem to catch a cold every time someone in the supermarket sneezes so there is that. I feel stronger and as soon as the weather gets better I plan on beginning a health regimen. When you saw me in the mountains during that first visit there, I was basicly propped up on megga steroids my doctor had put me on to combat aids wasting syndrome…It sure gave the impression that I was healthy as an ox but it was mostly smoke and mirrors…I stopped taking them not long after that as these things take their toll as well…It seems that there is always a trade-off to these treatments but when the alternative is no treatment and possible death you might be surprised as the things people will put their body through.
The thing that I can not put my body through anymore is stress. Maybe it's also a part of getting older but my doctor says that it's a part of the disease that my body just can't deal with stress the way it used to.. I hate like hell to admit it, but the week or so mom was in the hospital, I made myself sick with the though of going to Florida. It is a direct cause and effect and it has happened enough times to my body for me to know that it just isn't all in my head. There's a direct link between stress and sickness in "regular" uninfected people,and it is much more so in those who are HIV affected. Even today I have to have monthly blood work to make sure that these drugs aren't building to a toxic and potentially fatal level…It is nearly as difficult to deal with as the virus was before treatment. I suppose I have traded one problem with another but as I said before, It's a trade-off and I had pushed my body to the point where I had little to no choice left if I wanted to live. The next challenge will be to see if I can survive this chemo to see the next generation of meds hit the market..The drug companies are always pushing the frontier as long as there are customers out there…
On the financial front, here it is. Like I said , It' s nobody's business but there seems to be a disconnect in the reasons why I haven't been down to Florida in a while. When I applied for disability back in 1995 I was shocked but not entirely surprised to find out that my employer of the last 11 years had not made a record with the IRS…It was fairly common knowledge among employees that he "cooked the books" but it made it appear in fact that I had not worked in over a decade. The upshot of this was that I recieved and continue to receive the minimum amount that any person who hadn't worked a day in their lives would get from the government which comes to $673. a month. In other words poverty level…Even so , I managed to live without a roommate for a long time before meeting Adam. There is no need to itemize penny for penny what our collective incomes are, but suffice to say, that with a mortgage and the day to day cost of living, we are keeping our noses above water, just. We have a nice old bungalow outside of Atlanta that we've made our home and we are happy, even if precariously set there.Of course I don't need to tell you what this economic mess has done to the cost of living. I wish that you could have brought mom by to see our house on your last trip back from north Georgia with her. I know she would have been so happy and proud to see me here.
In the past, when mom has more of her mental faculties she told me a dozen times " I can love you SO much better from 500 miles away!" It always sounded a bit harsh, and we always laughed at this but I knew it was true. The old "Out of sight out of mind" saying always seemed to be a family tradition for us all. I don't know what in the world anyone thinks that I have been doing in Atlanta for the past 30 years, but a lot of it has involved just having a life of my own. A large part of this has consisted of surviving this virus while still seeking happiness and fulfillment like ANY person would.It has, and probably always will remain a juggling act to acknowledge it as PART of my life while not letting it totally consume my life. I haven't always made the right choices, but I think most people would agree that can be said of any of us. What used to bother me most was the feeling that you, Rich seemed to think that we have no real life here…That our lives are somehow less relevant and meaningful,and that we are able to just pick up and go at a moments notice, as free as the wind. Let me tell you right here, that I've been no more free for that last 30 years than any person is who has responsibilities, a job and a life.
I have made it a point to keep any hardships on the quiet and to minimize them, mostly for moms sake. I love our mother, and I miss her, but you have to understand, I have had a LOT more practice missing her for a very long time. It was her decision that kept me away from family events that could have involved a loved one of mine. Mom always carried a large shame factor and was a self-made victim of the "what will the neighbors think". It makes me feel as though this mindset has carried over to the rest of the family. I have to say that none of my family really ever stood up for me and seemed more concerned about what other people thought. Mom and you both will never know all the good times and things we might have shared if you had just opened your hearts and minds to accept me as I was, and as I am. I think that at this stage of life and there's no use in wasting time in "woulda -shudda-cuddas". The fact remains that you all have really missed the boat in not acknowledging my life.It has had, and continues to have, some incredibly beautiful and moments. I realized some time ago that I am not the only one who missed out on all those family events, all those Christmases, all those birthdays. You all have really missed out by not knowing me. It still makes me sad sometimes, but like missing mom, it is something that I have gotten accustomed to.
I wouldn't have aired this through an email but I hadn't heard from you since the day of moms surgery Richard.. I've left several voice mails to you but just assumed that you were chilling after all the stress of moms emergency surgery. When I got your email this morning it struck me anew that you just didn't seem to understand why I haven't been down there. I have always and remain willing to talk on the phone, in fact prefer it to an email. It seemed best me to take the time, put some thought into this,and choose my words carefully in my response I usually have my phone close at hand if you both ever want to call. It doesn't have to be a family emergency you know.
What I won't do at this point is hash over what someone thinks someone should or should not be doing. We've spent too many years watching our families repeat old patterns of Southern Discomfort and I see no need to put ourselves through any more of it do you?
Rich, If it is so important that I come down and see mom face to face then you have the power to make it happen. When mom had control of her money she made sure I was down there on a regular basis. Is there not sufficient funds after her cost of living to still make that possible? I've never asked for an accounting of the money because that has been pretty much your business and I've made it a point to stay out of it. Also while mom still had her home, I had a place to stay even if that never included anyone of significance to me. Of course that isn't possible now and hotels are incredibly expensive. An then there is the matter of Adam. There is no way I would imagine asking Adam to be treated like some second-class object even if he could manage to get time away from his job.
Again, it seems strange to say all of this in an email but it did catch me off guard and a bit odd to get that mail from you this morning Rich. I hadn't heard from you since the day mom got out of surgery. I thought that we were communicating a bit better but I hope this does clear some things up for everyone.Maybe it was a good time to get it all out in print. I love you both and I'm still here. If you want to call sometime you're always welcome to of course. My phone is never very far away from me.
Love, David
You Rock!! Can I use you as MY spokesperson??!!!!!
Wow, Loki, I have always had this thought in the back of my head to write something similar to your letter here. Last yr. '08, right before Christmas I had "words" with my older sister and she went right to Daddy (as usual….she is almost 60) she'll never GROW UP. Then the phone call came from my father and I had to defend myself and I brought up everything and I mean EVERYTHING…….FYI …..to anyone…. not good to keep all that junk bottled up inside. Long story short…..I now help my elderly parents and became closer to my YOUNGER brother and sister. As far as my older sister …….her siblings are not there for her. I hope you feel better after sending this to your brother and sister and they see your side……goodluck with everything
hugs, Bobby