I know I've not posted much over the last several months. It's not been a case of disinterest in the site or posting here. The difficulty has been a result of Derek's situation. I've had a difficult time with his death, with everything that led up to his death, with his absence, with the entire situation. The problem is multifaceted and not always easily quantifiable.
It would be incorrect to assume that my life has been entirely convivial since Derek's death. In fact, I've struggled emotionally with the entire situation since I originally called his family in early August (the emotional affray with it before then was also significant but for very different reasons).
I have struggled with the fact that I called his family since August 1 when I made the first phone call. Derek had made me promise for two years not to call his family. There were many reasons he didn't want them to know about his condition, but the two most significant factors were the disease itself (he was embarrassed to admit he had HIV/AIDS) and his sexuality (suspicions aside, his family did not definitively know he was gay). Having taken responsibility for his health and well-being, I was bound to respect his wishes and not involve his family. When the diagnosis of AIDS-related lymphoma (a part of the HIV syndrome which is always aggressive and always appears in the final stages of the disease process) was revealed, I realized Derek's time was short (measured in a few months only). That realization forced me to take action even though it directly contradicted Derek's wishes.
One thing that helped (even if only a little) was that I knew his family needed time with him since it was so limited. My mother, knowing how I had struggled with the idea of calling Derek's family, even said, "I had the picture in my mind of his mom being heart broken if she were left out of his need and something happened to him. She would have grieved forever for what could have been."
I love my mother dearly and respect her opinions, so it was helpful that, as a mother, she said, "I know I would feel horrible if my kids felt they couldn't talk to me about what ails them." Knowing what I did about Derek's mom, I felt she would feel the same way (as would most, if not all, of the family).
Knowing that a course of action will result in the best possible outcome does not mean that it's an acceptable course of action, however, and this is what I have struggled with since I made that call. For the two years in which I cared for Derek (during the most horrible part of the disease process), I had promised on many occasions not to contact his family. It was a specific request by him. In the position of being his caregiver and of having responsibility for running his life while he couldn't, it behooved me to respect his wishes. If there was any possibility of his recovery (at least to some level or normalcy), it was necessary for me to respect and follow his wishes.
It was with some sense of betrayal that I finally called his family. I knew his time was limited and that he would only last two or three months more at best, so denying his family the opportunity to participate in his care and to spend time with him would be devastating to them. But the ends do not justify the means. The fact is that I made a promise which I broke. I had assured him many different times that I would not contact them about his condition, yet I did. I do realize it was for the best and that the outcome was right, but that does not negate the fact that I betrayed Derek in some way by reneging on the promise I had made.
I struggle with the contradictory nature of that quandary. By the time I called them, the lymphoma in his head was already putting pressure against his spinal cord, esophagus and brain. This had the effect of negatively impacting his mental capacity. Derek was already slipping away. I had hoped, for myself, that this would help alleviate some of the guilt about calling his family — but it didn't.
In addition to the guilt over calling his family, I also struggle with guilt over my own feelings just prior to his last few months. You may remember that, after almost two years of sacrificing my own life in order to care for Derek, I became frustrated with the situation. I even felt as though I were being used in some way. I felt as though I had given up so much for insufficient reasons and that I needed to focus on living my own life again.
The reason I had sacrificed so much was because Derek didn't want to call his family and get them involved with his health situation. After two years of running myself into the ground and giving up so much just to ensure Derek was cared for, that reason didn't carry much weight with me because I saw it as a selfish excuse. Sadly I was ignoring what I already knew too well — that Derek's reasons for not calling his family were legitimate (albeit unfounded) and that, for his welfare (literally), I needed to respect his wishes. It is, after all, difficult to focus on getting better when your fears are being realized and your wishes are being ignored.
I look back on how I felt and question my own humanity. I know what I felt then was normal and reasonable under the circumstances, but looking back now makes me question it. Derek was dying — truly dying with only months to go — and all I could think about was myself. I didn't stop caring for him and didn't walk away from his needs, but my emotions certainly weren't wholeheartedly in favor of continuing to care for him. I had done my bit for king and country and felt that it was time to hand the torch to someone else. We were only friends and roommates, not lovers, so whose expectations was I fulfilling by giving up so much?
Looking back at it now, I feel tremendous guilt for the selfishness I felt then. I feel as though I did something wrong by wanting things to change, by thinking of myself when Derek was slowly passing away in front of my eyes.
He was doing better at the time. He had been home for a few months (which ended shortly thereafter, something I didn't know was happening) and his health appeared to be improving (something we only found out was untrue later when the lymphoma presented itself). It's a case of judging my actions against what I didn't know at the time — judging it against hindsight. If I had known at the time that he only had a few months to live, I would have felt differently, but that fails to reconcile the guilt with reality since I know how I felt at the time and only now know what Derek's true prognosis was.
Another part of my emotional pain has been a sense of failure. I spent two years of my life trying to keep Derek alive, managing his care, meeting with his doctors, making sure Derek himself understood what was happening and what the best decisions were, learning everything I could about his various diagnoses, and focusing primarily on ensuring that he received the best possible treatment in order to provide the best quality of life followed by quantity.
When you have spent two full years providing care for someone under these circumstances, I believe it's normal to take on a certain sense of responsibility for their well-being regardless of how much actual control you may have. In this particular instance, I was fully in control of Derek's life as if it were my own.
I am not responsible for what happened to Derek. I was never in a position to heal him. There was never anything that could be done to stave off his inevitable death (as is the case for all of us), but I cannot help but feel as though I failed him on some level, that I failed his family in some way, that I failed myself, that he died because I didn't do enough.
In addition to the second-guessing I've mentioned above (which is precisely what it is regardless of whether it's normal or not), I continue to suffer through all of the emotions surrounding Derek's death — the things we all feel when someone we love passes away.
I feel the anger over his death, knowing that this disease is horrible and painful and emotionally violent. Derek was a good man and certainly never deserved to die like this (or this early in his life). He was a great friend, one that I will miss for the rest of my life. He was a close confidant with whom I could share anything and discuss everything without fear or trepidation. I miss him so.
I feel lonely sometimes when I come home and realize he won't be here. I think about him often with respect to The Kids. He loved them so much. I feel bad from time to time thinking about silly arguments we had in the past and how shallow they seem now when compared to what has transpired. Simple things remind me of him as well as his absence, including television programs, songs and current events.
There is also the separation anxiety which I can clearly identify and know that I feel. This has been a double-whammy emotion since it surrounds two very different aspects of the situation.
First and foremost, of course, is the absence of Derek as a major part of my life. Eight years of close friendship, of being roommates, of being a part of my family, is not easy to get over. Derek was important to me. I feel his absence weighing heavily on me each day as there is always something to remind me of him. Perhaps it's something I see or hear that I know he would find humorous, something I would normally want to call him about or discuss with him when I'd see him next. This is the normal aspect of separation anxiety — missing the person after they're gone.
The second side of this is a feeling of near uselessness. It's not that I feel as though there is no purpose to my life, but I did spend the last two years focused primarily on caring for someone who was deathly ill and would never be completely better. I met with doctors and nurses and therapists, I visited the hospital almost daily to stay on top of his condition and to visit with him, and I spent the rest of my time managing two lives — Derek's and my own. I was responsible for managing his finances, dealing with his employer, fighting the insurance companies, and generally taking care of his affairs. Doing this for one life is usually a full time job. Doing it for two people is almost completely overwhelming.
Both of these aspects of the same emotion feel like massive holes in my life. There is a very real emptiness — both physical and emotional — which is difficult — but not impossible — to overcome.
I also feel terrible for his family. Despite any hardships associated with caring for Derek for two years before his family was involved, there is a certain sense of satisfaction that comes when someone trusts you with their life and asks you to ensure their well-being while they're unable to do so. As my mom pointed out, his family would have been devastated had they been left out of his need entirely.
And yet I cannot help but feel bad for them because they were left out of so much of his suffering and need. For the two years prior to my calling them, Derek's entire life had been entrusted to me for safekeeping. Despite the normalcy of this kind of situation in the gay community (we often have to rely more on our extended families because our nuclear families tend to distance themselves from us due to our sexuality and the societal stigma that comes with it), I know my family — especially my mother — would want to help and to be there for me when I needed them most.
Derek's family wasn't given that chance until the end. This was Derek's choice and I certainly respect his reasons for wanting it that way, but it must weigh heavily on his family to know they couldn't be there for him.
There were many things they missed that I know they must regret — his last Christmas, spent in the hospital; his last Thanksgiving, also spent in the hospital; his last birthday, as you can guess, spent in the hospital; the list goes on.
His family must also be struggling with what, from their perspective, surely seems like too short a time to spend with him before he died. They were called on August 1 and informed of his condition. Within days they swept into town, scooped him up, and only slightly more than a week later had him on a plane headed back to his hometown where they could care for him. On September 7, just five-and-a-half weeks after I called them and only three weeks after they moved him back home, he passed away.
They had suspected for more than a year that he was ill, and, even having guessed correctly at what was wrong, they never knew the truth until his time was so limited that they had less than two months to spend with him. There were many hopes of helping him get better, plenty of talk about friends and family helping take care of him, and a whole lot of love being poured out to ensure he knew he was loved. All of this was cast aside when he died, something I think must have left them feeling guilt about not acting on their suspicions earlier and perhaps being involved longer, shame that Derek had felt it necessary to hide his condition and life from them for so long and to such a detrimental degree, and anger about losing him so quickly after they found out.
The menagerie of emotions I have lived with over the last several moths, including those I've mentioned above, are my constant companions for now. I continue to struggle with the very normal emotional state that follows such an event. I gave up two years of my life for Derek. We were close friends and roommates for eight years. I expended tremendous amounts of energy, emotion and time caring for him when he couldn't care for himself.
It would be presumptuous for anyone to tell me that what I feel is wrong or that I shouldn't feel this way or that way. It would be laughable for anyone to say they know how I feel. It would be offensive for anyone to belittle these emotions.
I'm posting this entry as a cathartic exercise, perhaps even didactic as it relates to me, since I cannot live the rest of my life second-guessing my actions as I have done recently. I know these feelings are normal. I understand that, given the circumstances, it behooves me to face my feelings with my eyes wide open, to understand that what I feel is not out of the ordinary, and to realize that my loss is quite real. It will take time to get over some of these feelings while some of them will be with me for the rest of my life.
I felt it important to let all of you know why I've been so distant lately and why the site has languished in near-dormancy.
Evanescence said it best in the song "My Immortal" from their album Fallen. The following is a paraphrastic excerpt from that song that very adequately describes some of what I'm feeling.
…your presence still lingers here
and it won't leave me alone
these wounds won't seem to heal
this pain is just too real
there's just too much that time cannot erase…
…now i'm bound by the life you left behind
your face it haunts my once pleasant dreams
your voice it chased away all the sanity in me…
when you cried i'd wipe away all of your tears
when you'd scream i'd fight away all of your fears
and i've held your hand through all of these years…
…i've tried so hard to tell myself that you're gone…