Sitting with Suffering

Much has happened in the last couple of weeks at Joseph's House. We lost two dear friends in less than a week....and one of those deaths is what I wish to tell you all about today.

Tonya* moved out of Joseph's House the day I began work. She had regained her strength and was able to go back to her apartment, just a few blocks from my house. Her HIV was in check, with help from medication, and her cervical cancer had gone away. Full of excitement in her journey on, she left Joseph's House. About six weeks later, she moved back into the place she had left. Her cervical cancer had returned, and there was nothing the doctors could do to stop it. 

We built up a great friendship over the last two months. We watched football together, and I even rooted for the Cowboys with her (sorry Dad). We talked about boys, about friends, about family. We talked about our dreams and things we want to do. She really wanted to go on a Caribbean Cruise again because she had so much fun the first time. We watched soap operas together, her "stories", and laughed at how ridiculous they sometimes are. One evening, we were watching Extreme Makeover Home Edition, and she told me if she ever got a big house, there would always be a room for me. 

Her health was quickly declining. Her pain level seemed to be continuously increasing. She spent some time in the hospice inpatient unit, and when she came back, she was a different person. Her pain was in control, but she was pretty sedated. It was difficult to see a woman who I love so much unable to express herself with words, and sometimes unable to even open her eyes. I would spend a lot of my free time at work just sitting with her, holding her hand, watching TV, praying...just sitting.

The day after Thanksgiving, she began to have seizures. I had never seen someone have a seizure before, and witnessing this was really scary. I watched at she held her breath and clenched her jaw. I watched as she made deep fists, so strong that her nails were digging into her palms. I witnessed her legs lock up as they shook, and her body turn red. I heard as her teeth grinded against each other. It was terrifying. I was scared for her. I felt helpless. And one after another, the seizures continued. Along with a few co-workers and Tonya's dear friend, we held her close to us, constantly telling her we were there, that she was not alone, that we love her and that she will always be surrounded by that love. No matter how many times I said that though, I wished so much that there was more that I could do than just love her and hold her. I wished I could take the pain away. I wished that I could just touch her forehead and the seizures would stop or the fevers would go away. But I couldn't...and it is still so hard for me to accept that.

The seizures continued on and off for 6 days. Three days after the first one began, Tonya was taken back to the hospice inpatient unit, and we all knew that she would not be back at Joseph's House. My heart broke and for the first time in a long time, I questioned God. Why would he make her suffer for so long? If he was going to take her, why couldn't he do it sooner....and why did he have to take her from Joseph's House? Why couldn't she die with us? Why did she have to suffer? It didn't seem fair. She died on World AIDS Day, and my entire being wept.

I still feel the emotions so rawly. I miss her a lot and I wonder if she was ready to die when she did. The thing that stands out the most for me though, is my reaction to it all. Typically when things get hard or challenging, I run away. But not with Tonya...I stayed there as long as I could, and my heart is still with her. Yes, it is really hard to sit with suffering. My body aches when I do so. My heart cries out. My mind tries to tell me to do something to make the suffering end. But there is nothing I can do but sit, be, and love. I still want to run away sometimes, but something holds me there and allows me to be vulnerable, allows me to accept heart break. Sometimes I want to doubt God's existence, but something forces me to dive deeper into my faith instead. I want to cry out in anger, but instead I cry out in compassion. I am not sure what it is that keeps me there, but I am glad it does. 

At staff meeting yesterday, the administration shared with us a set of mantras by Roshi Joan Halifax. One sticks in my mind and I want to share that with you.

May I offer love knowing that I cannot control the course of life, suffering, or death.

God bless you all.

*Name has been changed.

Transition or Transformation

It amazes me how lives can change at Joseph's House, but I am also curious as to whether these changes will really be permanent. Is Joseph's House a place for transition or transformation, especially for those residents who become healthy enough to move out? Early last week, a resident was able to leave Joseph's House and move to a transitional housing program for men with a history of substance abuse. 

When Michael* moved to Joseph's House in July, he had a history of chronic homelessness. He had been living on the streets in the same neighborhood as Joseph's House for quite some time. He has HIV and was not taking medication. He is an alcoholic and a drug-user. He told me multiple times that his addiction always won. It was all he could think about. It dictated his every move. He did not care about people, he only cared about where he would get his next fix. As part of his agreement with Joseph's House - which is a clean and dry house - Michael began attending AA/NA meetings three times a week. 

I remember first meeting Michael. He was sitting in the chair in the living room, looking rather frail. I asked him how he was doing, and he told me his stomach had been really upset all day, causing him to feel incredibly weak. Later in the day, I began to hear more about his health, and found out that his HIV had almost won. He had a CD4 count of 1, meaning that for every milliliter of blood, he only had one white blood cell that would command the rest of the white blood cells to attack infections. A normal CD4 count is over 500. His immune system was far from functioning effectively. He had also just started on HIV medications that would help lower the amount of virus in his blood and allow his immune system to produce new, healthy CD4 cells.

Michael often seemed resistant to building relationships with any of the staff. He was busy dealing with his addiction, and sometimes it felt like he wanted to do it alone. Though he liked that people would travel with him to appointments or accompany him on walks around the neighborhood, he was constantly itching for his freedom. He seemed closed off, like he didn't want us around. I learned that his father had died from AIDS at Joseph's House just seven years earlier....and here he was, living in the same place as his father had lived, fighting the same health issue as his father had.

At community meetings, Michael would often tell us that it was hard for him to be at Joseph's House (especially when he felt locked down). He told us he didn't know how to love, or even what love meant. The only person he had ever told he loved was his mother...no one else. And here he was, at Joseph's House, where love is all around, and for some, may be overwhelming. He one time told Patty that it was hard for him to look at her because he saw his father...it brought back the memories of his dad's dying days in the house that he was now living in.

Michael was ready to move out of Joseph's House when the chance came. His health is much better and he has been clean and sober since July. He was ready to be independent again - or at least as independent as he could be. We were all excited to see him move on, but saddened and frightened because we did not know what would happen. During our goodbye ritual the day before he moved, each person in the community went around and said a hope that they had for him. Unfortunately, I was unable to be at work that day, but a co-worker told me the following. When it was Michael's turn to speak, he spoke profoundly about all that he had learned about love during his time at Joseph's House, and what the home and the community in that home has meant to him. Just the week before, he had stated that he didn't know how to love.

Our friend's life has been changed by Joseph's House in many ways. And while we don't know what the future will bring for him, there is so much hope in this transformation. I just pray that it is a permanent transformation....and that he will come back to visit...because we really do love him.

*Name has been changed.

A Mother's Love

A new resident moved in just over one week ago. Danielle* is a pretty twenty-eight year old who has HIV and heart disease. She was born with HIV, and my guess is her heart disease is the result of the virus working within her body. Her heart only pumps blood at 20%, whereas a normal heart pumps blood out to the body at 90%-100%. Currently, she has a medication that is constantly pumped into her (like an IV) assisting her heart in functioning. Without this medication, she would die within three weeks, and with it, she may only live for a year. 

When I first met Danielle, I was able to look past all the cords and tubes. At first, she really appears to be any other young woman. She has a strong personality; she is very funny; she likes to talk and loves Kit-Kats. She is very easy to become friends with because she is so open and friendly. She is the mother to two beautiful young boys, ages two years and nine months. She loves them so much, and seems like she would do just about anything for them. The boys are currently living with their father and grandmother in Anacostia, the poorest neighborhood in Washington, DC. Just a couple of days ago, the father and grandmother brought the baby to visit at Joseph's House. He is such a good baby - rarely cries, likes to laugh, and loves to cuddle. As I sat with the family, I thought a lot about some of my clients last year who would bring their children in. Sure, they, too, were living in poverty, as well as living with HIV. But at some point during the visit, it hit me....Danielle's situation at Joseph's House is so very different than my clients' back in Raleigh.

Danielle will most likely die in the next 12 months. I am not sure what her awareness level of this is yet. Perhaps she is still in denial, or maybe she has accepted it. I am not sure. As I watched her with her baby, though, I saw the true love of a mother; and witnessing that love brought tears to my eyes, as I remembered that she is dying. And here she is, at Joseph's House, unable to spend her days with her children. The boys live 30 minutes away, on the opposite side of town, and poverty really prevents mother and children from being able to be together. Her boyfriend and his grandmother both work full-time, wage jobs in order to provide for the boys. That makes it difficult for them to travel the 30 minutes to visit. Not to mention, it is easier for them to drive to Joseph's House than to take public transportation...and that costs money...and as we all know, gas is not cheap. 

I watched Danielle standing outside as her family got in the car and drove away. There was this longing in her eyes...longing for her boys, longing to be with her family, and maybe even a real fear of leaving it all behind. Just a twenty-eight year old mother, trying to do all she can for her kids, but her health and socioeconomic status as preventing her from even seeing them. I think about my friends, and what they would do in this situation. I think about new mothers I know and wonder how they would navigate all the barriers that are a reality to this young mother. What would you do? 

I just keep praying that we are able to make Joseph's House a home for Danielle...a place of comfort and companionship; a place of love and trust; maybe even a place full of family.

*Name has been changed.

Learning When It Is Not About Me

Joseph's House is not a place for the dying, I am learning. It is a place for the living. All of our residents are living each day, whether that living is nearing the end or if they are learning how to live all over again. One of our residents, who has become like a mother to me, is living with AIDS, has just been started on HIV medication, and is getting stronger each day. She has been a blessing in my life in so many ways, but mostly in her aggressive way of teaching me how to be patient.


With a strong personality similar to my own, she has a tendency to make demands. "Bring me a soda." "I asked for salt, NOT sugar." Pleases and thank yous are sometimes few and far between. There has been many a day when she pushed me so hard, I wanted to snap. I have cried because of her demanding nature and aggressiveness. I have found myself hurting inside because I feel like I am not being respected. But then she holds my hand and cries with me, apologizes for being so tough, tells me she loves me and she needs me....and suddenly the pain disappears. The next day I can laugh with her, get her a soda, and hopefully get the salt instead of the sugar. 


She has taught me how to love in ways I never knew how. Even through the frustrations that I encounter with her at times, there is this part of me that remembers that the little things should not hold me back. Those little moments should not be the source of anger, but rather a source of learning.


A week or so ago, a co-worker dropped her off at her family's house. She told us she would get a ride back home later that night. That night, she called around 9:30pm saying she had a ride and would be home soon...and she did not return. My initial instinct was that she had fallen and was in the hospital. She is not super steady on her feet, as she is gaining her strength back little by little. I became worried. One of our nurses talked to her brother, who told us that she was fine...so the worry disappeared and slowly began to be replaced by anger. Why would she call and say she was coming home...and not return? This continued for two days. She'd call, say she was on her way home, and then not show up.


I allowed my anger to grow to the point that I prayed I would not be the one at the house when she came back home...if she came back home. Two days later, I was working my late shift, and my co-worker told me that our friend was almost here and to let down the elevator for her. My heart ached. I expected the worst....that she had been out in the world again, using, hurting herself, when she was finally getting better and healing.


I watched as she got out of the car and walked to the elevator. I wanted to cry our of frustration, not knowing what I'd say when I saw her. My initial instinct was to say, "Where have you been? Why have you kept us worrying when you know we only want what is best for you? We only want for you to get better!" But when I saw her, I saw the fear in her eyes. Terrified she would be kicked out of Joseph's House, she practically walked by me without saying hello. My heart melted. The frustration disappeared. I hugged her and told her I love her and that I am so happy that she was home.


She sat upstairs with me and a co-worker and cried to us as she told us that the urine she just gave us was "dirty" and that she had been high multiple times when she was away. My heart ached as I saw the effects of addiction, but softened as I saw her courage and her bravery and her need to be loved. I sat with her for a while, just holding her hand. When I got up to leave, she asked me how another resident was doing, knowing that his health was declining. I looked her in the eye and told her the truth...that he is dying and would pass any day now. She began to cry again, looked at me, and said, "I have been so blessed and I don't know why." I told her, "I am just happy you are home," knowing that she could have died out there, especially if she never came home. As I began to cry with her, all of the anger and frustration finally went away. For the first time in my life, I was able to let go of the disappointment. I was able to get past the bitterness. I was able to truly love unconditionally. In that moment, I realized that it isn't always about me. This was about her, and I am just lucky and blessed to be a part of her journey.


Love is a special thing...but unconditional love - that true, beautiful love that knows no bounds and exists regardless of hurt or frustration - is the most amazing thing I have ever experienced.

A Peaceful Presence

There is a kind man living at Joseph's House whose presence for a long time intimidated me. He is very quiet. He spends much of his time meditating. His bedroom door is often closed. He doesn't speak too much English. Over the past few weeks, I have found myself avoiding his room. Our exchanges have been nothing more than simple "Good mornings" or "Do you need some pain medicine?" I have avoided him for so long, not because I do not know how to approach him, but because I am afraid to disturb his peace.

Like my friend who passed away a few weeks ago, this peaceful man is dying from liver cancer. Each day I witness his skin becoming more yellow, his body wasting away, and his feet swelling up as his body retains fluid. But for some reason, I still stay away from him. I have been told by many co-workers that this peaceful man has accepted that he is dying. He is ready to die. And still I stay away. As much as I say that I am fearful of disturbing him, or disrupting him in the middle of a meditation, I am realizing that I am actually scared of somehow messing up the peace that he has found. I am scared because it is so hard to fathom how some people can accept death and not try to run away from it or deny it like so many of us do.

This past Sunday, I worked the evening shift. After helping to clean up one of the other residents, I was getting some garbage bags from the hallway. I noticed that the bathroom door was closed and the light was on. Only one resident usually uses that bathroom, so I knew that our peaceful friend was inside. I heard the door open, met his eyes with mine, and next thing I knew, he was falling face first on to the hard wood floor. I watched as his swollen feet inside of sandals that didn't fit got caught on the threshold between the bathroom and the hallway. I watched as his arms flailed. Next thing I knew, he was on the ground. Two of my co-workers came flying up the stairs, along with our director. We helped our peaceful friend on to his back and got a pillow for him to rest his head on.

His chin was bleeding a bit, and he had chipped his front two teeth. He kept touching his teeth, as if to see if they had really broken. Each of us had a hand somewhere on his body - his arm or his head. Suddenly, he looked over at Cameron and said, "No CPR. No CPR." I was floored. Not for one second did I think this would be the moment he would die - and it wasn't - but to hear him say that, to so clearly accept that he is dying. My mind was really blown by that. How inspirational. How powerful. A few moments later, he looked as us, chuckled a little, and said, "Calm down." 

That's the kind of person he is, and I am really just starting to recognize it. Not only is he peaceful (which I admire so much), he also is full of joy. He puts others before himself. He is always giving - whether with a soft, gentle smile, or with some fruit that grows in China that his brother brings to the house. Even in the time that I avoided his room, I have learned so much from him about life. Every moment is special and is to be appreciated. Life is about being. I am really starting to understand what it means to be, and I am appreciative to this peaceful man for helping me see the light.

Redemption Song

My dear friend's battle with liver cancer ended this past Friday. My heart aches for him, wishing he was sitting on the front porch at Joseph's House to say, "Good morning, Shorty," or sitting in his room listening to Bob Marley. But I know he is still here in spirit. He still watches over me when I walk home, and he still greets me good morning when I arrive at Joseph's House.

Watching him die was one of the most challenging experiences, but also a very rewarding one. It was a time when I felt God's presence so clearly, when I was able to bear witness to the beauty that rises out of death. I spent most of the morning by his bedside Friday, writing him a little thank you note. I noticed a major change in him from the day before. He was breathing lightly. He was no longer moaning or wincing. It was almost like he was free of pain. As he slept, I sat there, watching, wrapped up in the mystery that surrounded me. A co-worker came in, and together, we gave him a gentle bed bath. Feeling his skin between my fingers was so intimate, so full of love, so powerful. As I moved his arm, his leg, his entire body, he peacefully obliged. Again, it seemed as though he was free from pain.

Early in the afternoon, our nurse came downstairs to find me. She said, "He is nearing the end. If it is important to you, and I know it is, you should go up to his room." I felt myself hesitate. I thought I could go to the bathroom first, but something inside of me pushed me and told me NO, you must go now. As I entered his room, I knelt at the foot of the bed and placed my hand on his foot. And that is where I remained until he took his last breath, and for many moments afterwards. 

He died peacefully, just as I had prayed all week. His breath slowly stopped and his heart slowly ceased beating. There was no groaning, no coughing, no evident pain. He so naturally died. My three friends and co-workers, entered the room after his death, and together we remembered. Balaji had his hand on our dear friend's leg and my hand in the other. My other hand rested inside Tina's while her other hand held Sam's. Together we mourned. Together we grieved. Together we remembered.

The mystery surrounded us in those moments. Where was he now that his spirit left his human body? We began to perform the Joseph's House rituals - lighting a candle by the bed, changing the body so the family can see him in all his beauty. As we changed him, we turned on the stereo near his bed. Bob Marley's "Redemption Song" began to play. The word freedom just kept repeating itself, and that was when I knew. My friend is now free. He has been carried to freedom. He has left this life for one of true freedom, true joy, singing his redemption song. The world lost a love-filled man, a teacher, a passionate human being, but we have gained a true angel. And for that...I am eternally grateful.

A Breaking Heart

In my first few weeks at Joseph's House, I have noticed that the current residents are not quite I expected. Though some are dying, they are still mobile and independent. For the most part, they do not need much assistance, other than providing them with their daily medications. Some are in a lot of pain, that we control with needed doses of morphine or methadone. But otherwise, I haven't really felt like I work at a hospice home...that is, until Monday.


One of our residents is an African-American man in his 50s who is dying from liver cancer. I still remember the day I met him - his smiling face, his ability to talk about practically anything, his humor, this instant sense of love he exudes. He has become a dear friend of mine. He always watches the Jets just so he can talk to me about them on Monday. He loves reggae - which I love so much. He has had adventures I can only dream of. He is like a father to me in some ways. He always checks to make sure I am ok. He endearingly calls me "Shorty" and loves the egg sandwiches I make for him. He tells me all the cool places to go in DC, but always cautions me not to get sucked into the tourist traps because I should never spend $4 on a hot dog. One night, when I worked 1-9pm, he made sure that my administrator let me take the van home so I wouldn't have to walk home by myself. I tell him I love him, and he always says he loves me back...and I know he means it.


Two weeks ago during staff meeting, we were talking about this dear friend of mine and updating each other on experiences we have had with him. I'm not sure what happened or what triggered my emotions, but I found myself with tears in my eyes, unable to speak, as I became aware of just how scared I am to see my friend die. It is not out of fear of not having him here with me; it is more a fear of having to watch him suffer. I wish that he wouldn't have to be in pain, that he wouldn't have to lose his continence, that he wouldn't have to become so weak that he couldn't walk. I witnessed over the past few weeks, his skin and the whites of his eyes becoming more yellow as jaundice took over. I listened as he began to forget simple things. I experienced his confusion when he asked if it was 3pm, when it was only 10am and we had just eaten breakfast. I watched as his appetite decreased and he nearly stopped eating. At the staff meeting that day, I was overcome with emotion as I became aware of my fear.


Right after the meeting, and a few days following, I found myself backing away from my friend. My fear was winning. It was taking over and pulling me away from a man who I have grown to love in such an amazing way. I had to convince myself that withdrawing from this friendship would help no one - neither him nor me. It would only hurt us both. I challenged myself to face my fear head on. I pushed myself to take those extra moments each day to just sit with him on the porch or to listen to some reggae upstairs in his room. I made him breakfast and lunch a number of times and always checked in to see how his pain level was.


Monday when I walked up the stairs to the front door, I felt an uneasiness within me. I walked inside and into the living room where my friend was sitting, asleep on the couch. I walked away, did a few things, and then went back to see him. I tried to wake him up, simply by saying his name. Usually, when he is asleep on the couch, it is easy to awaken him. This time, though, it took me touching his knee to bring him back. He looked at me with confusion in his eyes. Throughout the day, I witnessed as my friend began to decline. And now, I know, he is really dying.


My heart hurts. I cry often. Not because I cannot imagine being at Joseph's House without him....but because seeing him suffer breaks my heart in a way I have never experienced. Watching his body shake uncontrollably as he moves into sleep. Walking him to the bathroom, with my hands under his arms so that I can break his fall if need be. Standing in the bathroom with him as he barely makes it to the toilet. Having to change his pants, boxers, and give him his first pull-up diaper. Holding and tilting a cup of water to his mouth so he can swallow his pain medication. Seeing his brother's heart break, too. My heart is breaking while I watch the toll that alcoholism has on the body. My heart is breaking as I witness my friend dying from liver cancer. My heart is breaking....in a way that I cannot explain.


And this is why I am at Joseph's House.