I was diagnosed with HIV/AIDS in October of 2004 when I was 33 years old. I found out also that I was unchecked for 18 months prior to my diagnosis. At the time of my diagnosis, I had a son who was 14 and a daughter who was 10 years old. I have been a single mother since my daughter was 2 and my son was 6. I was living with a man for a few years prior to when I got the disease. There was a major issue that came up and he was arrested in November of 2002. He didn’t go to trial until June 2003, ultimately he was sentenced to 10 years in prison for harm to his daughter. I was in a pretty bad way, and I spent a lot of time at the local tavern trying to figure out where to go from here. I was working for Allstate Insurance Company in the claims department and was making a decent wage. After the trial, I was advised to take some personal time off to gather myself and refocus and heal. During that time, I met a man at the tavern that later became a major person in my life, my partner Bobby. We became close over our woes and problems in our lives and began an intimate relationship. What was not disclosed when this happened was his status: he had HIV and didn’t tell me. I did ask him his status and told him that I had two very good reasons in asking, he lied and I believed him and didn’t insist on protection. I have taken responsibility in my role in how I contracted this disease, I don’t excuse what I did, I should have insisted and I didn’t. I trusted when I shouldn’t have.
At the time, I still believed that people that I associated with couldn’t had HIV. I live in a small town in Ohio. We know about AIDS of course, but we still think and believe that it only affects IV drug users or the gay community. It couldn’t happen to a straight, white female who lives in small town America. I have learned how wrong, unbelievably wrong, that is, and a very frightening attitude to have.
Bobby told me in the beginning of our relationship that he had health issues that crop up from time to time but nothing to worry about. So, at the time, I didn’t worry. I had my own worries in keeping up with the finances and sole responsibility of my household. The prior man left me months behind on my bills and I was struggling to make ends meet. I got evicted from my residence over a dispute with my landlord over fixing my overflowing gutters, which he refused to fix or refused to pay for. I withheld rent payment in protest and he went to court. I didn’t know at the time that you have to put your rent into escrow, (believe me, I know now!), and had to move to another location. Six months into my new place, Bobby’s health started to fail and I was the only one who was taking care of him. I started missing a lot of work and had no more personal time to take after I used up what I had after the trial. I ended up in trouble with the HR department and was summarily let go in February 2004. I figured I would get him over the health crisis and go back to work at another company. He ended up in the hospital on life support with kidney failure as a result of a water borne bacteria he contracted after working on his sister’s hot tub. He was in a coma for three months. I lost my home again and was staying with a friend with my kids. We got into an argument and she kicked me out but allowed my kids to remain. I was sleeping in my car for six months, taking care of him all day in the hospital and then taking care of my kids at night and sleeping in my car in the hospital parking lots. I was only getting child support so it took me a long time to save up enough money for first, last and security for a new place. I finally pulled it together and we got into our new place in the winter of 2004.
After the first hospital stay, Bobby was able to come home to his parents in the summer of 2004. He was home and on dialysis three times a week up at the hospital for a couple months when he got pneumonia and ended up back in the hospital in late September. While we were in the emergency room waiting for them to take him up to a room, the nurse left his chart on the foot of the bed. I happened to glance down at it, and at the top of the right hand corner it said, “pneumonia AIDS-related.” It was like the bottom dropped out from under me. I finally realized what was going on and added up all the facts. I had never been so angry and so scared in my life. When he got transferred up to his room, he knew that I knew. When the staff left the room and it was just him and me, I tried several times to open my mouth to yell and scream and rail, but nothing would come out. While I struggled to get the words out, I looked over at him and all I saw was a river of tears pouring down his face and the most dejected look I have ever seen. All I could say was I love you and I am not going anywhere, but I have to leave now. I went to his parents’ house and sat up with his mother and bawled in her lap all night long. I couldn’t understand why he lied to me and how he could put me at risk if he loved me so much. I still can’t all these years later.
That night laying there on his mother’s couch, thinking of everything that has gone wrong in my life and everything that I have had to overcome, being a parent at 18, losing my virginity to a violent rape at 14, the abortion I had to get at four months along in secret at 14 due to the rape, moving out of my parents’ house at 16, having the love of my life and my daughter’s father walk out on us when she was a year and a half old, nothing compares to this. What if I am positive, what will happen to my kids, I am all they have, they have very minimal contact with their fathers. What will happen if I can’t work anymore? Who will support us or help us? What do I do about Bobby? Do I stay or walk away? Do I charge him for a crime or forgive him. The next morning, I went to the hospital to talk to him. I walked in and sat down and I said to him, you and I are going to have a talk, I am going to get everything and all information I ask for, you are going to be honest with me, and then you and I will go on and we won’t have to talk about this again. He agreed with me and the questioning began.
I got all I needed in that talk. I got the how, why and when. I got the nitty gritty. I got honesty and I lived up to my end of the bargain until September of 2006 when he passed away in my arms in my living room. I gave him everything I had to give and more. Because of that, he made it another two years he wouldn’t have had without me. I don’t see it as heroic or I am a special person for doing it or think I deserve a pat on the back for it. I loved him and I did it for only that reason. But all things come at a price. The price I paid was my own health and standing. I couldn’t go back to work while I was his full time caretaker. I wasn’t paid for that service by anyone or any agency. If I would have been able to do so, believe me, I would have begged for it. I finally had to put my foot down and tell him that if I was the one who was taking care of him, he was moving in with me with his disability check to help me with the rent. The child support I got was barely enough to keep us on the minimum end of ok. At the time, I didn’t qualify for any services such as food stamps or AFDC cash assistance as I was getting child support, even though it wasn’t enough to live on. I had no one to advise me on any type of these matters. I had no idea how to ask for help from agencies or public assistance in being his caregiver. I tried to apply for unemployment and I received it for about three months and then Allstate said the claim was no good as to the way I left my job. I had no idea what to do.
After we had our conversation, he sent me to an agency called Violet’s Cupboard out of Akron, Ohio. I got tested there, the nurse came back in the office and sat down and looked at me and I knew right away before she even said a word. I then started treatment at the CARE center at Akron City Hospital. I am still a patient and a client at both places. I was put on the meds because my initial cd4 count was a 153. I didn’t tolerate the pills well at all. I was severely sick and made it extremely difficult to stay on them. I was then put on another regimen with the same results. I have gone through most of the med lists and have become resistant to most of them out there. I have finally found one that is tolerable, but I still have difficulties with them, just not as bad as before. I will be one of the first ones to applaud everyone involved behind the scenes who have made the medications better and easier than before. I still have problems with them and some of the general practices out there now, but that is later on in the story.
While I was taking care of him up at his parents’ house before I moved into my new place, I filed my first application for disability benefits. The first time, I applied for SSD, not SSI. I had enough credits to qualify to apply for SSD at the time from my prior work history. I had my phone interview and things were moving along. By the time I was given my first hearing, I had moved into my place and Bobby had come to stay with us. I didn’t have an attorney for the first one, I didn’t think I would need one. I have studied law since I was in high school, for personal as well as it being the profession I was going to pursue in college. I went to paralegal college and got my certification in many areas, but not my final one. I had to drop out when my daughter was born and I wasn’t able to complete the last five months of study I needed. At my hearing, I was honest in my responses to using cannabis as a relief agent for the side effects of my medications. I was denied for that reason alone, not that I didn’t qualify for the benefits or I hadn’t the evidence to back up my claim, only that I was an “abuser.”
I had researched the qualifications necessary to obtain benefits under the HIV/AIDS clauses that the CDC had put in place during the beginning of the disease. They state clearly that the difference between HIV and AIDS is your cd4 counts. If your counts are below 200, then you are classified as having AIDS and are therefore defined as being a disabled person. Of course, since I didn’t have an attorney, I had no one to advise me about appeals or that if you started a new claim, you lost all the time and ground you had on your first claim. The second time I applied, I got an attorney and still qualified for SSD and not SSI benefits. I settled in for the wait time for my hearing, confident that I was going to get my benefits.
While I was waiting for my hearing, Bobby passed away. The day before he passed, his mother told him that she was diagnosed with lung cancer. She went through treatment and was doing ok, then she got a recurrence and didn’t improve. She didn’t last a year. During the time of her treatment, I spent a lot of time with her, helping her with stuff around the house and keeping her company when the family wasn’t able to be there. After she passed away and her funeral was over, the family told me I wasn’t welcome anymore and they cut off contact with me, which has not changed to the present day. The sad part is that Bobby told me before he died that his family would treat me this way, I guess I was still naive in thinking that they would want to keep contact with me as I was the one who took care of Bobby and then their mother, but I am sad to say he was right. I don’t know the reasons behind it, but it not only saddens me, it angers me. It wasn’t just from his family either, it was the whole town that turned their backs on me. He was the big football hero in high school, his father was the football coach and well respected. No one knew of Bobby’s secret side and life. He was a bisexual and had many encounters with men, but no one in town knew about it. He always said he contracted HIV through a bad blood transfusion he received after he split his nose open when he crashed his car into a pole. He told me the truth when we had our discussion in the hospital, but I also agreed for him that I would never disclose it to anyone that asked. All of his family and friends didn’t know he had AIDS, the only ones in his family that knew were his parents. They spread the story when he died that he died of cancer and not AIDS. They expected me to go along with them. For a while I did, until it got to be too much for me. No matter where I went around town, people were coming up to me asking me if he died of cancer or something else. They had that sly look to them and that condescending tone to their voices that told me they already knew and were fishing for information. I tried my best to stay silent until I couldn’t any longer. I was tired of living in the shadows of his making and that is when I decided to own up to my own disease. I am still trying to do that very thing.
From the beginning, Bobby didn’t want me to tell any of my family or friends, including my kids. I violently opposed that, I have always been open with my kids and my family and I don’t keep stuff from them. We fought about it for about six months before I finally told my kids. They were very angry with me for keeping it from them even the short time I did. They were still fairly young at the time and it was very hard on them, they were afraid I was going to die and they would be alone. My parents were angry at him for exposing me, and angry at me for even having him in my life. My relationship with my father was never the same. We were extremely close and I was an only child, so I had his full attention and love as his daughter. When he found out about this, he couldn’t look at me the same and I felt the change in us. I wasn’t able to repair the relationship to be what it used to be, a few months after Bobby’s mother died, my father passed away suddenly in August of 2007. He went into the hospital thinking he had a case of food poisoning and ended up dying on the operating table from an aneurysm that went from his abdomen to his heart and he bled out. I am still trying to get over losing my father even after all these years. It never stops, the hurting, the wishing things could have been different, the wishing I could have said the things I wanted to, all of that. It is still as sharp and painful as the day it happened.
Somehow I made it through his funeral and started to handle his estate. I was the sole beneficiary as I was his only child, I thought I would be protected for some time while my case was going through and I was waiting for my hearing. Little did I know what a mess I had on my hands. Since no one ever thinks they are going to die, he wasn’t prepared in any kind of way. I ended up losing his condo to the bank in foreclosure, I couldn’t afford the house payment and condo fee payment while it was on the real estate market to be sold. Right at the time I put the condo on the market, the real estate market collapsed and nothing was being sold. I got an offer for what price I was asking, it was enough to pay off the mortgage and fees and clear a ten thousand dollar profit. The bank refused the offer and I had to relinquish the house and lost my profit. He had a 401k through his job that had $86,000 in it, it was given to my mother as she was the beneficiary on the forms he filled out. I got a $5000 dollar life insurance policy that was in my name that I had to use to pay for his funeral. I was left with his furniture and his checking account that had about $15,000 dollars in it. I still had to close all his accounts and give back his leased car, so it didn’t leave me much to work with. I still wanted to relocate out of the town we were in. We were being harassed almost daily by the local police department and by the residents hounding me about how Bobby passed away. The kids and I decided to relocate to another town, so I was able to secure a place and pay the first, last and security and pay for the moving company and get a second hand car. We got settled in and I figured I had enough left over in my account to pay our rent for about nine months, and by that time, I would have my hearing and my benefits would kick in and we would be as ok as we could be. I was completely wrong in this, as I found out.
When I was able to get to my next hearing with my council, I was confident that things would go my direction. Little did I know that my attorney had some sort of problem with AIDS patients. The entire hearing, she was sitting on the far edge of her chair, as far away from me as she could get. She had this look of fear in her eyes that I had never encountered before. This was the first time I saw actual prejudice in practice with this disease and it distressed me to the point of hysteria. The moment the hearing was over, I fired her as my council. I got no referral from her for another one. I don’t know if she said anything to other attorneys around our area, for years afterwards I couldn’t even find an attorney who would take my case. Each time I would have a hearing, the vocational expert that testifies for the state said I was still able to work. When I would get my hearing decisions, the judge always said he based his decision on what the VOE stated in his depositions, regardless of what the doctors said or what my health was dictating.
I was running out of money and options when someone advised me about the housing program, Section 8. They have a three year waiting list to get approval, but I had an advocate from the AIDS coalition speak to them on my behalf to put me at the top of the list. While I was fighting to get on this program and save my house, I ended up three months behind in my rent payments and was facing another eviction. I had to beg my mother in the parking lot of the courthouse to write me a check to give to my landlord to stop the eviction, which she very grudgingly did. I was saved from the streets one more time. My housing voucher kicked in and I was at least able to keep up with the rent. I would go without electricity for months sometimes because I couldn’t keep up with the bill. In the summer, we went without gas service for our heat, but had no hot water and had to boil it on the stove and shower in cold water. We didn’t have a water or sewer bill where we were living then as it was in the country, but our landlord didn’t provide salt for our water softener, so we had to drink rusty water. I had to junk my car as it developed a water hose problem and water would back up into the interior of the car and it started to grow mold, which became extremely hazardous to me. I was trying to find any kind of job that I could do working out of my house so I wasn’t around a bunch of people in an office, there was at the time very little out there that was for a legit company. During this timeframe, I went through two more hearings that resulted in no benefits. I had to represent myself in each one of them as every attorney refused my case. My numbers were sinking more and more to the single digits and I was getting sick all the time with stuff that I couldn’t shake off. The social security administration also told me that I was longer qualified for SSD benefits as I passed the time to qualify for them. I then had to start claims under SSI and start from scratch again.
Around 2008, I met a man who gave me the impression that he was perfectly ok with my disease and would not see me any different. I really believed him at the time, after Bobby died, I tried to date a few times here and there, and at first it would go fine, then the inevitable problem would crop up, my status and how to discuss it. It always started out the same, I would get the horrified look, then I would get the speech on how they don’t care, don’t see me any differently and we will be just fine. Then would come the awkwardness in the intimate life and the thought that was constantly in my head, that in the actual act itself, I am putting this person at risk of having to deal with the same thing that I am, and I was the one who did it. Even though someone else had done it to me, I couldn’t in good conscience do the same thing to someone else. It made things extremely difficult and upsetting for me. So when this man showed up and didn’t give me the same type of attitudes, I latched on with both hands, thinking that things would be ok with him, he will take care of me and protect me and be good to my kids and everything. He turned out to be the biggest nightmare I have had to live through. I wish now that the three years I spent with him would have never happened.
He was an army ranger, special forces in the 101st airborne, First Sergeant, that mustered out on his last tour overseas and was staying with friends in the area I lived in. I met him at the local tavern (there is something not good to be said about meeting people at the local tavern, never looks as good sober as it does while drinking) and had the qualities at the time I thought were wonderful, strength and power and forcefulness. All those qualities are good to have, until they are used to harm you. He had severe PTSD and was a very heavy drinker and would get violent at the drop of a hat. He was working for a tree service one day and fell out of the tree he was clipping, broke his right leg in three places, and was laid up for about six months. In the time of taking care of him and helping him with what he needed, I, of course, paid no mind to my own health and ended up with a severe case of shingles on my right side that I could not get rid of for a good four months. I never really healed from that, I have nerve damage all down my right side due to the severity of the episode. His drinking escalated after his accident and he started to get violent with me and after one episode, he ended up punching me in the jaw with his full force, after he berated me for hours beforehand telling me that he can’t wait for me to die so he can dance on my grave, I don’t deserve to live, my kids would be better off with anyone else but their sick, weakling of a pathetic mother that I have become, and if I ever tried to leave him or do anything to him, he would slit my throat while I slept. I had heard it so many times before that I didn’t care at that point and I almost wished he would kill me in my sleep. That way I wouldn’t have to go through the pain of my life anymore. I knew that I had hit my bottom of my self-esteem. If I was willing to put up with the treatment, maybe he was right and I didn’t deserve to live anymore, didn’t deserve my kids love and support, they would be better without me. That is how low I had sunk. Thanks to God and my kids, they both gave me the strength to get out of that relationship and kick him out of our house and our lives. He didn’t go quietly.
Right around the time that this was going on in the household, my daughter was trying to complete her senior year in high school. I got through my son’s graduation back in 2009, he had to repeat his sophomore year after he found out about my disease. He started going sideways and flunked out of school. I got him turned back around when we were able to leave his district in the middle of his second sophomore year and get him in a different school. He finished high school with a 3.9 GPA and started working to help out in the household. He was in good shape, so my attention was then focused on her and getting her through it. We kicked him out about two months before she graduated. She was able to make it through, and I spent the summer getting them ready to enter Akron University to start the fall semester. They started their fall semester and then I was offered a job that was out of my house. I took the position and had to go to their offices in Akron for a week of training. I had been out of the work force for about eight years at this time, and I was very scared of being in the office with all these people when I knew that my numbers were in the single digits. I was susceptible to catching anything these people had, and I knew that a major illness at that time would be my undoing.
I made it through the training week and started my position out of the house, a week into my job, I ended up with shingles again, this time on my left side. I was out of work for two weeks and then put on a modified schedule of four hours maximum per day. It was torturous sitting in my office chair with patches of shingles all down my back and across my entire left side. I was in extreme pain and it lasted for five months. At the time also that I started this job, I was on a med regiment that was no longer working. At that time in 2012, there were no more meds out there for me, I had gone through the whole list and was resistant to all of them. The doctors and my kids and my family all thought this was the end for me. I have to admit now that I thought I was also. I was ready for it and if it happened, I was ready to go out. I then get a call from my doctors telling me that there is a new drug out there and he wants to put me on it. At the time it didn’t even have a name. It took me three months to get it and get Medicaid to approve it as it was not on the formulary for them yet. I finally started the regimen of Stribild and Reyataz in December of 2012. At the beginning, I was extremely ill from the side effects of the pills and trying to cope with them while at the same time of dealing with the remainder of my shingles bout. I was throwing up between my calls I was making, I was having difficulty in meeting my quotas, and I was having vision problems from side effects of the meds and couldn’t focus on my computer screen. I started to have to take a lot of time off from my schedule because I couldn’t get through my shifts. I was let go in April of 2013 because of my poor health. It was one of the most humiliating experiences of my life, getting fired from working out of my own bedroom. It didn’t do a whole lot for my self-esteem, and forget about having any faith in my own abilities anymore: it was just terrible.
Right after I started working this position, I filed my current application for disability, my sixth one overall. At the time of my application, my CD4 count was a five. It took almost two years before I got a hearing on this application. For the first time in all my other go arounds with the courts, the vocational expert that testified for the state said that I am not able to work. I was also able to find an attorney who would take my claim. Even after all the other failures and problems I have had with my previous claims, I really felt like I am finally going to get my benefits. Not only did I have my doctors all on board, I had my extremely low numbers and the VOE on my side. Imagine my surprise when I got denied again. This time, the judge said that the VOE’s testimony didn’t hold any merit in his decision. But, how can that be when all the other previous claims were denied because of the same party’s testimony that said I was able to work? This doesn’t make any sense to me, nor did it to my attorney. We filed an appeal, where that sat in the courts for another year. On New Year’s Eve, I got my denial on my appeal. I then retained another attorney and appealed to the federal level. That one sat for another year, where the decision was vacated and sent back down to the courts for another hearing. I had that hearing in Feb/March of this year. Again at this hearing, I had the VOE testify that I am not able to work. Not only do I still have the original claims of HIV/AIDS and depression from 2012, since then I have acquired Grave’s disease, which is an autoimmune disease, had radiation treatment to remove my thyroid, and neuropathy, not only from the two bouts of shingles I had, but also from progression of the disease. I have also acquired problems with my kidneys, because of the years I was on Stribild and progression of the disease, I now have renal failure and atrophy and have major incontinence issues. The end result is failure and dialysis, they say now that I have full function on my right side but only 60 percent function on my left. It is a slow progression, but still troublesome. I also suffer from anxiety and depression. They have tried a number of times to get me on anti-depressants, but I am extremely reluctant to take them, I have seen what they do and the damage that occurs. They may be helpful for some, but I know they are not for me. I have enough medication to deal with and enough side effects to cope with, I don’t want to add to it if I don’t have to.
I firmly believe that pills would not help me, what would help me is to know that I am secure and in a stable household, and I can contribute to the household and we are not in any danger of losing the roof over my head all the time. I especially don’t like to be the burden I have become to my children. I am very lucky in that they are willing to live with me and support me, but they need to have a life also. It has been so stressful for them, they made it only three semesters in college and had to quit. They couldn’t be students and be fully financially responsible for the household. My daughter was so stressed out by being the sole person responsible for the bills, she had a breakdown and lost her job. She then moved out for about two years trying to make it on her own with the man she was with for four years. She recently moved back home a couple of months ago when her relationship broke up and has to start from scratch again. She is trying to help out with the bills here, but has her own expenses as well. She also wants to go back to college and is trying really hard. My son has been the steady earner and has willingly taken on the role, I still feel horribly guilty about him having to take on the whole house on his own. They say because I raised them alone their whole lives, that it is now their turn, but it still doesn’t make it right. I should be able to do something and help out. I know that later on down the road of this disease, I am only going to get worse, not better. I know that people think that you can live a long time with the meds out there now, and people have different views on it, but I have seen this disease up close and personal. I know what it does, I know it won’t be the same for me like it was for Bobby, but it doesn’t mean that when the end does come, it won’t be slow and painful and hard on my kids and anyone else in my life. I am scared all the time.
I am scared that I haven’t done enough, I am scared that when I do die, I have nothing to give my kids. I am scared they can’t even afford a funeral for me, I have nothing to leave them. I am scared that when I am not able to care for myself, I won’t even have a house to die in. I am always scared, and there is a way to take that fear away and I can’t seem to get the courts to see it. After my hearing at the beginning of the year was over, I couldn’t believe it, they denied me again. Stated again, that the testimony the judge has doesn’t hold any merit in his decision to deny my claim. He can deny it and he is going to do just that. So, once again I am in the federal courts on my second federal appeal on a five-year-old claim that is a legitimate claim. And again, they tell me I have another year to wait for a decision. All this in itself is bad enough, but then if it couldn’t get any worse, it did.
A few years ago during a food stamp phone interview, the caseworker casually mentions a program they offer called the disability financial assistance program. They give you a stipend of $115 dollars a month and when your disability claim is approved, you have to pay back the amount they have given you to the state. I signed the contract with the state of Ohio and I had at least that to pay for my personal things, like my tampons and hygiene products. I wasn’t able to contribute to the expenses, but I was able to get the things I need for myself. I use different products for the ailments that crop up that I deal with, such as skin problems, dental problems and ulcers in my mouth, thrush on my tongue, etc. I made up a list of the things that this money paid for in preparation of my state hearing that I just had in August of this year. I received a letter in July stating that at the end of the month, the DFA program is no longer in existence because of budget reasons. I asked for a hearing and tried to get them to not do this. I, of course, lost my appeal to them and I no longer receive the stipend. Of course, though, when I do get my settlement, I still have to pay back what has been given already, which really sticks in my throat. I still have to pay back a program that you are taking away because the state can’t afford it anymore?! I am absolutely appalled at this latest turn of events.
I am also horrified on a daily basis with the current president and current administration and their blatant disregard to this population. I don’t know where to turn anymore. I have a judge that is clearly biased for whatever reasons he has, he is a visiting judge at that, and a heap of evidence to prove that I am not able to be out in the workforce. Even knowing that I can’t do a regular job anymore, I still have dreams and ideas of things I would like to do. Once upon a time, I owned and operated two home-based businesses when my kids were small and not in regular school yet. I had a typing service and a cleaning service. I wasn’t breaking any records, but I was able to keep us going and pay the bills and keep a roof over our heads. I know I could still do something like that on a small scale and I know what I want to do. I would be able to accomplish these things if I was able to get this claim approved. At this time, the social security administration owes me back pay on this claim, which in November of this year will be five full years. Of course, there are attorney’s fees, two separate fees actually, the local attorney and the federal attorney, and now I have to pay back the state of Ohio. Even after doing all of that, I would still be able to do what I wish to. My biggest fear is that after all of this pain and all of this time, they are going to deny me this claim and I will have to start from scratch again. If that happens, I lose all my back pay. I don’t know how many more times I can keep doing this, and how many more years I have to fight the red tape they keep throwing at me. I am terrified that when I finally get them to approve my benefits, I will be so far gone that my quality of life is gone also. I feel like I am walking around in constant circles and there is no end in sight for me. I am fighting a battle not only against the disease, I am fighting a battle with time, the courts, myself and my abilities or my lack of them. I am no longer myself and what I used to be.
In the 15 years that I have been battling this disease, only in the last two have I have really ever even used the word hope, or thought about any type of future. I didn’t get that luxury when I got my diagnosis. I have also started counseling about four months ago. I don’t think it is really helping me, but it is another hoop that I have to jump through to show “them” that I am compliant. Even still, I am trying to be open minded with it, which is a difficult thing to do. Everyone has hopes and dreams, people with AIDS aren’t usually grouped in with them, but we still do. Everyone hopes for a cure, everyone hopes that it won’t be them when they are waiting for their test results, everyone hopes they will last for a long time, everyone hopes they have the one thing that is always the most fleeting with this disease….time. Hope can be a dangerous thing, but it can also be the only thing left to cling to. If I can find at least one thing daily to remind myself on why I get up every day, it is a good day. I also have many bad ones, and I have no calendar on when they are going to crop up. I just have to ride them out when they happen. It makes me very unreliable in the professional world and not too swell in the ordinary one either. The guilt used to eat me alive. I have had to look deep within myself the last few years and figure a lot of stuff out, and most importantly, I had to forgive myself for letting this happen to me. I had to really forgive Bobby and I had to own up to my end of what happened. He wasn’t sleeping with himself, regardless of his lies and silence. In the end, it was my fault as well as his. For the first time, I am at peace with it and it does help, but not everything is that easy.
I see and hear all the things out there in the world now about this disease and how people react and talk about it. I get that for the first years, it was all negative and all there was is death upon death and no solution. I applaud the advances that have been achieved in the last 30 years, and I am an advocate of taking research further and finding the end of the road for all of us. I hope that I will still be here to see it. If I am not, I hope that at least the ones that have been taken won’t be forgotten, including myself. One of the worst things to think is, there is nothing concrete left to show you were here and you mattered and you were worthy of saving. I hope and I dream….
The reason I am writing this story is to get some people’s attention, I hope I have yours still. What I would want more than anything in this world is some peace of mind and some security. How to accomplish that is within my grasp, but I fear it will not happen the way I would like for it to. I plan on taking my settlement, if I ever get it, and apply it to a down payment on a home that would finally be ours and not be at the mercy of rentals and landlords. I would like to get into a nice family-based neighborhood and open my own greenhouse. I want to grow my own herbs and veggies and fruits and be a self-sufficient food source besides meats and dairy products. I want to make my own products, cleaning and well as personal hygiene and open up a little neighborhood stand to sell or donate to my neighbors. If I would get any type of payment it would be used to purchase what I would need to continue to grow and make products. I want to teach piano to elementary age children to get them the opportunity to have a love of music. I was trained on a piano since I was three years old. I do have a piano, but it is sadly out of shape and out of tune and needs to be rehabbed. I would love to have space in my house to get into crafting and creating things. I would be able to sell them at my stand if I wanted to and again, whatever I would get in money, I would use to get more supplies. I also have a great love of books and reading, I have seen a few neighborhood libraries that people have at their homes. I would love to set one up so the children of the neighborhood can get a book, I would need to purchase the materials to build it and also to stock it. I can also get my typing service back up again and include notary services. The course and exam of course cost money, but if I was able to complete the course, I would be certified to provide that service. I also want to get a lecture together to go to the college in my city and speak to the students about how it is like to live with this disease. I live about three blocks away from Kent State University and I would be able to speak there once I got all of it together. All of these things I want to do have the possibility to produce an income, the only difference is, it would not be an income that the family would have to rely on to survive. If I go through a bad patch, the house would still be able to go on without my production or attention. If I would continue to improve, I would maybe have the ability to make them a part of the household make up, if I decline and don’t bounce back, I would still have the security of knowing that the ones I am leaving behind will be ok. This is the only thing that keeps me going, gives me that one reason to try to get up every day, hold on for that one moment longer so I can achieve it and still be able to enjoy it.
This is why I force myself to take my meds every day, to hang on to still be here for my kids. They may be adults now, but they still have a place in their lives where I fit in. I filled their childhoods with terror, holding their breath every day watching me fade away and being helpless to stop it, praying every day to a god they don’t believe is there to give them a break and not take away their mother yet. I have to make this right, not only for them, but for myself. The sad thing is that I can achieve all these things if I would get my settlement that I am owed. No one with this disease should be put in the position that I have been put in. No one should have to wait five years on a claim that is legitimate. It is difficult enough to get through the day with this disease, when you live with the fear every day and the uncertainty, the loss of dignity every day when you have to rely on others to support you makes it even worse. People have to realize this disease doesn’t treat everyone the same, it doesn’t affect people the same, and when someone says they can’t do what they used to do, they aren’t whining, they aren’t trying to get one over on the system, they are saying they aren’t able anymore. When that does happen, it is up to us as a society to listen. When doctors and “experts” say that you aren’t able, their opinions are supposed to hold merit. How do we begin to fix the problem? One way is to have some judges that are familiar with the inner workings of this disease, and when the claims are legitimate, let them get approved so people don’t have to worry about being able to support themselves. Again, no one should be where I have been and continue to be.
I am looking for advice, assistance, and whatever help that I can get to get my story out there. I am sure that I am not the only one that is going through this, and I am not only speaking for myself, I am speaking for those who have no voice. This treatment is not acceptable, I am a good person, not a criminal or a freeloader looking for an easy way out. I am an American citizen, and I am being treated like a second-class citizen in my own country. There is going to come a time where this disease is going to get the best of me, it has already had 15 years to do its damage, is that when they are finally going to “grant” me the benefits I deserve? When I am so debilitated that I have no quality of life anymore? When did quantity mean more than quality of life? Why is it that some people’s lives are expendable or don’t have as much merit as another? When was it ok that the course of my life and my future and the control and management of my own disease has fallen in the hands of others to decide? I want my life back, and I need some help to achieve that. I hope that after reading this, you decide to do what you can to help me achieve an important goal. Thank you for your time and your compassion, if nothing else comes of this, I hope this made you stop and think for a minute and remember, every story you hear is a person who is just trying to make it the best way they can. God bless…….