Tuesday, February 24, 2009

The Bryan Chronicles

This one is very hard for me to write. It’s a very personal story. It can be construed in so many ways. I guess I still feel a tinge of guilt, and I worry what others will think of me. But it is one of those things that I need to tell. For myself.

I had been laid off from a construction job and had difficulty finding another in a slow time for construction. I was fed up, however, with the whole industry. I began to look at other options. I found myself checking out a massage school program, and enrolled. As part of the program, we had to accumulate intern hours where we actually performed massages outside of the classroom. An opportunity opened up to massage hospice patients and caregivers on a volunteer basis. I signed up, knowing that it really fulfilled 2 purposes – my desire to help people, and my desire to graduate.

I was able to massage cancer patients and 3 caregivers after a short time. I enjoyed my time with each. And then I received a phone call about another patient—close to my age. A man, Bryan, with a muscle disease. HIPA prevents the hospice from giving any other information. I nervously called his home, and made the appointment through his father. I would be lying if I said the thought didn’t scare the poop out of me. What would he look like? I envisioned a wheelchair bound person who could not hold his head up, who drooled, and could not communicate. I assumed it was a problem from birth.

I nervously approached the door to the family’s home, in my scrubs, with my massage lotion in tow, and my racing heart. Bryan’s mother answered the door, and ushered me up the staircase to the 2nd floor. Bryan’s room was at the end of a hallway. I entered, in terror. What I saw, was not anything I expected.

I saw a young, dark headed man with blazing blue eyes lying in bed. He looked as nervous as I felt. He was not drawn up, he was not drooling. He was deathly skinny, and his limbs were stiff, but he looked normal. I introduced myself, and promptly began to massage with care because I was afraid of small talk. He informed me that he wasn’t going to break. His speech was understandable, but he struggled at times to get it out.

Bryan’s gleaming eyes spoke volumes. He was vibrant on the inside. After massaging him, he told me he had Lou Gerigh’s (ALS) disease. It came on him suddenly, and no one knows the origin of such a curse. It hits randomly. It is the disease that is usually behind assisted suicides. Healthy people quickly degenerate, unable to feed themselves, to walk, to communicate. They are alive on the inside, and dead on the outside. It’s a horrible way to die. Usually, they suffocate to death, within a few short years of diagnosis. The only treatments merely buy you a few more months. Every muscle atrophies.

Bryan kept asking questions. And I found myself completely at ease. We laughed as I massaged. We talked about who he was before the illness—he had worked on computers and was independent and was healthy.

His family called the hospice and requested I return. They said Bryan's demeanor was nearly his old self again after I left.

I began to make a weekly trek to his home. Massaging him. Talking to him. Laughing with him. He would have a flower for me every time in the beginning. I would stay after the massage and we would watch Dr. Phil. And I found myself falling for this dying man.

I grew to love Bryan. Coming from bad relationships and a failed marriage, this guy couldn’t hurt me. He was safe. He couldn’t disappoint me. And I believed in the power of miracles. Couldn’t God heal him? Wouldn’t he? I had never been so open with a man in my life. Bryan taught me to bare my soul, and be OK with it. He didn’t care about my oddities or my social inadequacies. We would go to movies and dinner. We went to the museum. He was able to his arms slightly and operate his wheelchair when we met.

My parents met and loved Bryan. I saw an amazing love in them that made me proud. They treated him as if he was one of us, and never flinched taking him into public. He loved them as well. They prayed with me for him. They were not ashamed of him.

Over time, Bryan deteriorated more and more. I can’t tell you how hard it was to see that happen. Eventually, he struggled to operate his own wheelchair. His speech became less understandable. He had a feeding tube. I took him to a healing service at my local church once, much to his mother’s disgust. Nothing happened—no healing, no changes at all. His deterioration was much slower than normal. Unexplainably slow. That was both a blessing and a curse. I had researched other possible reasons for his condition, since he did not fit the ALS mold completely. But no one seemed as interested as I was in finding a better answer to his degeneration. Maybe they had been down that road. And maybe they were tired of fighting.

Bryan’s family was full of bitterness and anger. After being there a while, I realized that there was a constant power play. There was a harshness in that home. Bryan, his mom, and his father were all guilty. They provoked each other. When they felt attacked, they used the most hurtful verbal weapons they could think of against each other. They loved each other, but they hated what had become of their lives. Each of them had dreams, and all were squashed by the illness. Instead of retiring and taking it easy, they were lifting their 35 year old son from chair to chair, dressing him, and making their home more accessible. I began to dread my visits, to avoid his parents, to chide Bryan for his participation in the drama. But it only intensified over time. My stomach would be nervous before each visit.

After a year, I was mentally wasted. I was working 2 jobs – massaging by day and full time graveyard shift at night. I had to fit visits in with Bryan, and always ran on half the rest I needed. Bryan’s lungs filled with fluid and he was hospitalized. The reality of his looming death became even more apparent. He survived, but not without some emotional damage. He wanted our pastor to come by and talk to him, and so I set up a meeting. In the meeting, very little talking occurred, but Bryan cried. And his mom humiliated me by holding a glass of wine and staring the pastor down. She didn’t want anyone to make her son cry (apparently that was reserved for herself and her husband). Our pastor wasn’t welcome, and he left. As did I. In humiliation. In anger. In disgust. In mourning for the way things could have been.

My heart changed. I was taking a codependency class, and I realized that one reason Bryan had been so attractive to me is that he was safe. I was tiring of witnessing the manipulation in his family. And I was just . . . . . . spent. I had nothing left to give to anyone or anything. I had promised Bryan to be there until the end, and I would have, if it were not for his home and his increasing manipulation.

The more I tried to pull away to get a break, the tighter Bryan would hold onto me. He became possessive. He became manipulative toward me, and lied to keep me close. He seemed desperate. And I began to resent it. He had sucked the life out of me. I realized that even if God healed him physically, there was so much dysfunction in his home and his life, that he would still be a shell of a man. He would have to go through intense therapy to shake the craziness of the world he had been bound to since his illness kicked in.

Finally, I walked away, after almost 1-1/2 years. I knew that people would judge me. I knew that they would think I abandoned him. I knew his family would see me as a horrible person. But I couldn’t do it anymore. I had failed Bryan. I had failed myself. But I couldn’t do it anymore. I mourned that decision, but it had to be. My communication had to end, because I was such a victim to his pleas. I had to make a break and not look back, or I would go back and become as bitter as his family.

I now am thankful for my freedom, but find it hard to discuss this relationship with people. I usually get confused looks when I mention I dated a dying man, or I dated a man who was in a wheelchair. The assumption is that I have a screw missing of my own. Until you know someone like that you can’t imagine the humanity of the person and the beauty of their spirit. I have a whole new appreciation for physical challenges. I think Bryan is still alive today—3 years later. His father passed away recently, I saw it in the paper. Some days I wonder if God will heal him and I will pass him on the street one day, in awe. Or if he will find out it's not ALS, get treatment, and then find me and spew anger at me. He's had the disease for 13 years now. Whatever happens, I've made peace with my decision, and followed my heart.


Naida Lee said...

ick.. that's hard. cause you know he is probably latching on to you so hard b/c you're the only person that showed love to him.. yet you couldn't let him walk all over you. that sucks. i had to ditch a friend b/c i was pouring as much into the friendship as i could b/c she was down.. but instead of appreciating the friendship she would treat me poorly in return.. and you just can't do that. but it's still hard.

Kristi said...

Girl, you know it. I have found myself in friendships like that, and they suck out your joy. They need and need and need, and give little in return. Those relationships are more harmful than helpful. You have to draw a boundary with "friends" like that. Otherwise, you will enable them.

Jeff said...

I was there. You did the right thing-both in starting the relationship and ending it. It was a life-changing relationship for both of you.

I was very proud of you through it all. You were honorable. You didn't let him down. You didn't fail. It was an untenable situation.

Every relationship in our lives changes us. It is and always will be a part of who we are.

(The other night when we were chatting, I was not thinking of Bryan. But now I have it straight.)

Kristi said...

Jeff, I figured out who you meant in the middle of the chat. :-)

This is one of those relationships I avoid talking about, so writing about it was making myself more vulnerable than I like. I'm glad it's out.