It’s been almost ten yeas since I was diagnosed with AIDS, and nearly twenty years since I was infected. During that time I have written many pages, chapters and thoughts. I have lately reread and relived some of those days reviewing what I have put down. I have considered putting it together in a book someday. Here is a chapter for your review, any comments and critique are welcome and appreciated….Scott
Am I brave and courageous?
"You are handling everything so well," "You look great, much better since I last saw you", "You sound great", I hear all these quite a lot from family and friends, even co-workers. I often wonder just how well I am handling all of this. When you feel like crap it’s hard to hear how great you look and how well you sound.
My wife Melanie is my number one supporter. She literally tells how amazing I am in dealing with AIDS, the pain, the social problems and heartaches, my drive to get better, and just the actions that she thinks I have taken to be the perfect patient. I don’t feel brave at all. I certainly don’t think of myself as courageous. About three weeks after my initial trip to the hospital I had a little streak of feeing good. Not that I felt really great, but I had some energy, I was doing things and not feeling completely wiped out. It was the Labor Day weekend I think. Melanie and I went my parent’s house for a bar-b-que in the early afternoon and we had plans to go to another party that evening. I ate well; I wasn’t so tired that I couldn’t catch my breath. The worst thing happening with my body was that I was shaking like crazy. Melanie and I always laughed about it. I am not sure how my family took it that afternoon when we joked as I at chips and dip and shook like crazy as I got it to my mouth with half the dip left on the chip. The point is I was feeling better than I had since I had left the hospital. My very good friends called me before the evening party and said they had a surprise for me and that they would bring over before the party. It turned out to be a home gym and we all rushed to clear out the spare bedroom and set it up. When we were done I was hot, very sweaty, and tired. But, we still had a party to go to and off we went. I spent most of the party relaxing by the kitchen table after the hard work of getting a home exercise room put together. I was feeling tired, probably more than every one else that helped but I didn’t have that sick and tired feeling. I mingled and joked and even sang a song on the karaoke machine late in the evening. How good it felt to be on the road to real recovery. I was making grand plans in my head to work out and do all kinds of things that would prepare me for my return to work.
The next couple of days I felt good again. It was a fine Saturday and Sunday. I wasn’t on the couch completed exhausted from Friday activities. Monday was a holiday and that went just as well. I started my workout routine of riding the stationary bike and working out on the weight machine. Somehow my hopes had hit a high point that AIDS was just chronic disease that could be managed with medications and a healthy lifestyle. I was the poster boy for adherence to medications and I was beginning the slow change to a completely new and healthy life.
That night I was up late, I had taken quite a bit of pain meds this past weekend for the neuropathy that was just beginning and I was out in the garage at about one o’clock smoking a cigarette. I had not stopped smoking yet, that was still to come in its own time. Sitting out there, by myself, Melanie asleep already waiting for the workday to come tomorrow, alone with my thoughts.
How utterly alone I was.
Thinking, thinking, and just thinking.
It came on slowly, a review of my situation, my family my friends, having AIDS. I had an incurable disease. One that I couldn’t even tell anyone about except a very few people. A disease that I as terrified my wife might now have. She had tested negative at her first test but needed a three month test to be sure and a six month test to but absolutely confirmed.
How unfair all this was.
Me alone in the morning at one o’clock in the garage, cigarettes one after the other. This should not happen to me, and it would be my fault if Melanie got sick too.
So alone in that damn garage.
No one but me and this shitty fucked up disease that was going to kill me some day.
I felt it rising up from the very bottom of my soul.
From my heart and body as a whole.
Myself, my disease, and my sorrow and self pity.
Up it came with a surety that I have never felt in my life. I tried to hold it in, my anger and my frustration.
I was like a dam about to burst. I didn’t hear the ticking for the last month that was in me, a human bomb, and I was about to go off. No, not about to, I was going to. The ticking I had covered up with, "You’re handling this so well", and all the other well meaning versions of "You are doing so great". I had just spent a great weekend that was the topper of them all. The Icing on the "you are a brave and courageous" cake.
As I sat in my chair, cigarette in hand, alone, it finally came. My body shook and my head swam and the tears came.
They came with a force that had been pent up for years and poured out with great fury and profound feeling.
I sobbed hard and long.
My miserable condition overtook me with wracking tears as I shook the silence out of my quiet garage.
Time seemed to stop, and all I could do was feel.
Feel the pain of my present.
The heartaches of past.
The insecurities of my troubled future.
These tears and sobs were all the feelings that I slighted over time, that I brushed away with not even a second thought. The came with a pain that I cannot describe fully. At first it was hard and cold. I was utterly pitiful and sorry for myself. Why me was all I could ask and the answer was a hard stab to my heart.
I was out of control.
This I do not think is brave. I now realize that I was cowardly treating my feelings as if they were trash to be thrown out every week. Except they never left. They just sat aside and grew.
Courageous? As I sat wallowing in my misery my soul ached for what was good and loving.
And that was only one thing.
Sleeping just through the door and down the hall. I had to go to her and share my awful fears. For a moment, I was ready to sit it out on my own, sort ride out the storm and then I would really put these feelings in there place. Perhaps harden myself one last time. To be that brave person for everyone else and once and for all forget my own feelings. I struggled for only moment. I did have courage and it came from a place I never thought I would have. It was down the hall sleeping. The love that my wife had for me was never based on how well I was. It was true and free. I went to her, I walked sobbing to my bedroom, sat on our bed and said her name only once. She reached up and held me and the tears came with renewed vigor. I grasped for what I felt was my life and she responded with a loving embrace that I know I will never forget. My tears and sobs came. And I talked in stops and starts. These tears were different though. They felt as if they were cleansing my mind and clearing my heart. Instead of holding it in I began to let it out. If any person reading this is fortunate enough to have had this feeling and know the difference between tears of pain and sorrow and of tears of love and openness then you, like I, are blessed. Walking down that hallway on that night, I believe I showed what could be called courage.
The tears came for quite a while. Two people together with there feelings. I slowly regained control. We talked about my pain and sorrow. I was still sad and so was Melanie. We cried together that night. We have cried together since then and I hope we do whenever we need to.
Courage and Bravery, I see them much differently than other people do. I feel brave when a nurse pokes an IV needle into my arm and I don’t scream. When I face my disease and look for my future health and I cannot find the answers I do not see the brave person that I am told I am. I hope that I will have the courage to walk down the unknown hallways that are ahead of me. When I do, each time I think that then, I get to be brave. When I can think of being brave as more than just getting used to a shot from the nurse, then I know I am making progress.
It is important to remember that I do not get to define courage myself. I have listened to my friends and family and I can see some of there heartaches with all this. I wonder what exactly is going on in there minds. What kind of courage does my mother have when we talk on the phone about some new problem that I have? Or when she comes over to visit and finds me stuck to the couch difficult to get up and around. I can see her bravery. It is a much different kind that I must produce. I think that by no means is it less difficult to face. Especially with my wife and mom. They have come to me and put forth an awesome effort to help in my recovery. To raise my spirits when theirs are probably as low as mine. You can see that this is also an example of courage in the situation that we all are in. I may be sick but I am not alone in all this and just that helps me when I need it most. I believe that is important to have others around to inspire you. Bravery and courage need inspiration. It helps to get the strength flowing. In this I am lucky. I have my family and friends who are constantly ready to prop me up. From them I hear, "You look great", "You arte handling all this so well". And when I do hear this I think again to myself, It’ is not so bad at all to hear these words. It is who is saying them and what they mean. I feel these comments in my heart and it soothes me. So even if I feel like crap I secretly hope that someone comes up to me, puts their arm around me and says, " I am glad to see you are doing great".
Almost three years later, courage bravery, neat words. The act of them has left me at times, and shown up at others, quite unexpected. The unknown hallways that I predicted I would need to walk down, well, they have presented themselves. And not when I want them to at all. Currently the longest walk of all is that towards a divorce. A shitty walk I might add, but, I am taking it, and very unwillingly.