This is a story of courage, strength, and love..I love you girl!!
In Angela's Words:
I am a surviving partner of an HIV positive individual, his name was Shawn and he contracted HIV as well as HEPC through a blood transfusion to treat his hemophilia. So already from the beginning he didn't have it easy. The transfusion happened before the government made HIV testing mandatory for donors (before 1985).
I was 14 and had met him just before his 20th birthday. Now I had no idea about any of this, him being sick with a blood disorder as well as having HIV. I knew when I met him that he was special, that I would know him for a long time, that even perhaps I may have met him sometime in a previous life…. crazy but that's how I felt and still do when I think back on it. Now as you can imagine I was in high school and had many friends, people eventually started informing me that he had HIV, to stay away and be careful…. that made me mad, I didn't believe them, I thought “that's impossible, he's a virgin.” But I guess that is what most people think when they are naive to the epidemic we have on our hands… never in my wildest dreams did I think there was something wrong with him.
Shawn hid it well, we started off as friends, just hangin' out and having fun. On one weekend I stayed over, we all got smashed and slept over. The following night we had our first kiss. It took a while but we eventually got romantically involved and still I was unaware there was anything wrong. Yes that's wrong of him, we worked that out and it really was my decision to stay, I was so relieved to find out up until that point I was HIV negative, I got routine tests when he went for his counts… all negative.
He never took any H.A.R.T, he tried AZT but there were too many side effects, he essentially went the herbalist way, even saw a DR. a few times. Aloe Vera Juice, St. John's wart, Gingko Biloba you name it he took it! So as time went on I noticed him becoming delusional, was believing the craziest things and treating me like a liar… it was the virus acting on his brain since he had been sick for 10+yrs with no traditional therapy but occasional anti-biotics.
So thrush started happening more and his Dr's finally convinced him to go on HART, so he started with a triple cocktail and his counts were so astronomically high compared to his non-existent T cell count. In a couple of weeks the viral load dropped by the thousands, we were so happy.
We started talking about possible marriage around this point, I started some courses at a local college and I remember it was mid May and I came home one day to find him in a depressed state, no enthusiasm and this persisted for a week or so, then one day I was talking to him and he was talking with such slurred slow speech it scared us! I asked him “what's wrong with you?” He didn't know what to say; he said he thought he was finally getting the big one.
We made an appointment at the hospital with his Dr's and right away we got a cat scan, he had no symptoms but at this point it was June 3rd 1998 he was Aphasic, he couldn't express words like he had a stroke or something. They knew it was neurological. I was 19 and hearing all this for the first time scared the crap out of me, the Dr. explained that it could be treatable like Toxoplasmosis or this other one and lastly PML (progressive multi focal leukoencenphalopathy)
The Dr. said that if it was PML, that would be the worst outcome, not treatable, very progressive deadly disease, like MS but fast-forward by light years practically. So I didn't let him get the better of me, I remained optimistic, all this was discussed away from Shawn, so he had no idea.
We went to Radiology and he had his scans and right away the Dr. was there with a grim face, “ya it looks like PML but we should perform an MRI to be sure, but he definitely has some lesions on his left frontal lobe!” We went up to his office and Shawn was away with a nurse, I started to cry and asked for something to read, literature or something because I still wasn't going let this get me down. He gave me a single paged leaflet folded in 3 with the worst info I could ever have read, but it did inform me regardless… the outcome, 3-6 months of life and at the end you either go into a coma or suffocate from lung collapse… the disease ruins your motor skills and then messed with your hard drive to control your simple functions of life like… breathing! So sad.
So I cleaned myself up so I wasn't crying and got him, we got home and I remember looking at him and knowing exactly what he was thinking, good thing too because at this point it was all on paper or sign language… no matter how hard he tried he couldn't get the words out right. I asked him if he wanted to know what they said, he said “ya”, I gave him the leaflet with the bad news and let him read it, we both cried, I held him and told him that it would be ok, we still don't know babe, lets just take this 1 day at a time… easy for me to say. But it wasn't because it is the worst thing to know the person whom you love more then life itself is going to go out like this!
For the next few weeks, I watched him progress and get worse, less movement on his right side after his first seizure, petite mal one, happened in the bathroom, we ambulanced it to the hospital and I impressed a Dr. so much with my knowledge he later offered me a job in his private office! I made this my mission, to fix him or improve the quality of life; I gave up everything essentially to care for him. He got prescribed Dilantin and we went home, I guess the dosage wasn't enough because he had another one a few days later and that left him with even less mobility on his dominant side, right side… first the arm, then the leg and then the toes.
I felt like with each seizure (there were only 3 different times) it was like the aftermath of an earthquake – you're walking around the wreckage trying to find out what works still.
So the Dr.s and I discussed quality of life and I had told them that I wanted him home because that's where he's been all along, “I'm taking him home to die?” is what I asked originally and they said “yes.” I passed the tests they gave me in supporting his frame and getting him where he needed to be, he could help a little still with his left side. I was giving him his factor XIII shots and meds and herbs, oh yes lots of herbs, $200/month on herbs.
So thanks to C.A.T.I.E (Canadian aids treatment information exchange) those people really helped also P.H.A.N (peel HIV AIDS network) they were so supportive and were always there when I needed anything.
Now I'll go forward a bit, now it's November, he is not doing well, I'm changing his diapers, I have the V.O.N (Victorian order of nurses) and some homecare products like a wheelchair and some back support for our bed and bed rails and a table and products to use for him. I was bathing him on our bath bench we got and basically caring for him like he was my baby, and he was. I figured if I was going to marry him that I would be there through thick and thin, so why not just do it then, so that was what made it easy for me to stay… how could I have left? Never.
So Nov 12 he was released from hospital from the 3rd set of seizures (grand mal) and final ones.
By the 17th he was no longer holding his head up, I remember I was going to transfer him from his wheelchair onto his bath bench and when I looked over his head which was upright was now completely back! That freaked me right out, then I knew that it was coming soon. So I made the decision to take him in to the hospital so he wasn't suffering at all, how could I know but I wanted to be safe, good thing because his right lung had partially collapsed! They didn't think he looked good, he was sleeping like 20 hrs a day starting to drift off into a coma, they offered the idea of having the priest come, we had prayers around his bed and cried and talked.
I decided to leave, I wanted to be home, he was fine, I knew in my heart of hearts that he wasn't going no where that night, I just knew. By that time I was so neutral over the whole thing like desensitized I had done a lot of crying and grieving for what could have been and what we had lost and what we ultimately would lose. So I was pretty strong, had to be, had 3 cats and a dog at home I had to mind as well.
On the 5th day of being in hospital Nov 21 1998 (I moved in too this time, was there every day and night on a gurney beside him-right up high so I could see him) the Dr.'s came in and began discussing colostomy bags and feeding tubes and a bunch of other invasive procedures… it scared the crap outta me, he is a hemophiliac he could bleed to death if they do this stuff even though he's having shots everyday! I was still doing the nurses job, they accepted it.
I was giving him a sponge bath and I took advantage of the privacy we had, I began telling him…
” I am so proud of you, for hangin in there for this long! 6 months and they said 3! Your my hero, you are so strong and brave for going through all of this, I know your worried about me but babe this is killin me, it's breakin' my heart… you have to go, did you hear what the Dr. said? Come on now, you WON, look all you have is oxygen and a couple of IV's, you have stayed home all this time, had nice meals and smoked weed up until a couple of weeks ago… what more could you ask for… go while your still U, before they want to change you… go home honey because that is where you belong now, I know their probably here waiting for you right now.”
That is pretty much what I said… I then decided to go and have a cigarette and while I was gone Shawn took his last and final breath. The nurse found me and I guessed what happened because I already knew there was nothing they could do for him. I said 'he's dead! Isn't he?” She pushed me forward and I resisted till I was looking her right in the face. I decided to do that walk to the room on my own, it was the most peaceful I had seen him in like forever… no more noise of the oxygen, no more watching him struggle for air or have strange hands all over him. No more fighting for his rights and privacy, I was his voice for those months and boy did I do a lot of fighting for him.
He was strong, a fighter and very inventive, he taught me a lot in life, how to be a good listener for one and how to be strong even in the grimmest situations, there is always a positive in a negative, to be hopeful because in the end no one can take that away.
I was 20 when he passed away and now It has been almost 10 years, I met a wonderful man about 7 yrs ago who we share 2 beautiful boys together and we're happy. I still keep in touch with that family because in a sense they will always be my family in a way.
Thank you for taking the time to read this, it means a lot to me if this can help even just one person!