Grief and DID: Staying in my Window of Tolerance

I lost a really close friend on March 17, 2020. I’ve lost a lot of friends along the way, and their deaths will always hurt a lot. Most died from suicide and drug use. M died at age 50 from a terminal illness. She survived Hodgkin’s Lymphoma when she was 17, but the radiation she had in the 80’s to fight the cancer caused permanent damage to her body. She had heart and lung failure. The muscles and tendons in her neck were almost destroyed and she could barely hold her head up, which caused her shame. She was in a lot of pain all the time. Despite all these issues, she kept going. She was definitely a fighter. Her doctors gave her a few more years to live, maybe 6 years best case scenario. But she died suddenly in March. I always tried to prepare for the day she’d be gone, but it’s not something you can really prepare for. Losing a best friend will always be a jarring and life altering experience filled with pain. In the end, I’m just so glad I met her. She was one of the strongest people I’ve ever known. She taught me a lot.

I first met M in my mental health support group. She showed up to our group one day tired and angry. She looked very sick. She was not only suffering from chronic pain and the loss of her ability to do things she loved, but she was also dealing with unsupportive family members. She was articulate, funny, and smart. She told her story to strangers who sat there trying to absorb the painful facts of her life. We listened and supported her. She said her parents were controlling, her mom was her PCA but wouldn’t even cook for her, and her teenagers were selfish and wouldn’t spend time with her. I have a bad habit of trying to help people in pain despite the fact that my life was a dumpster fire, so when she said, “I wish I just had someone to go for hikes with,” I said, “I will.”

We bonded right away. I could tell that she just needed someone to listen, so that’s what I did. I realized her health was so bad that she probably couldn’t even go for a hike. I listened as she told me stories about her husband who became addicted to heroin and eventually died of an overdose. She had to divorce him when it got really bad, but it broke her heart because she still loved him. After that she had multiple abusive boyfriends who traumatized her. She told me those stories over and over. She was also very angry at her kids for not helping out around the house and not making time for her when they knew she had multiple terminal illnesses. Her father was verbally abusive and controlling, and her mother wouldn’t do the things she was supposed to do as her PCA. Poor M spent whatever energy she had cleaning and trying to cook. Besides the muscles in her neck that were damaged, her esophagus was too. She’d often have a hard time eating, and a lot of the time she didn’t eat at all. I could hear the anger in her voice as she spoke about all the people who mistreated her. Her friends stopped spending time with her when she couldn’t go out drinking anymore. She even had a therapist cross her boundaries and told her she loved her, which was upsetting for M, and she refused to try therapy again after that. I didn’t blame her, but I gently encouraged her to get help. I tried to help her make changes to improve her quality of life, but there really wasn’t much I could do but listen. And I definitely did that for many hours. I hope it helped her in some way.

She helped me a lot too. I met her during a dark time in my life, and she was always there for me without judgment. She listened when I needed to talk, and her house was always a safe place to go. We’d often sit in her living room for hours talking until 2 AM. I’d take her for drives to places she wanted to visit. I’m not a huge fan of shopping, but we’d go to stores, and she’d browse for as long as she could walk. She loved the outdoors and the beach. She spent a lot of time in the hospital with pneumonia, but I promised her in the spring I’d take her to a beach. That never happened. I trusted her enough to tell her that I have DID. She accepted me for who I am. I didn’t tell her details about my past, but I told her enough that she understood how it was caused, and she hated my parents. She said, it’s like they all have different jobs. I said yeah, my parts all took on some kind of trauma, and they helped me survive. It meant a lot to me to have a friend who knew everything about me and still wanted to spend time with me.

The depression she experienced was killing what quality of life she had left. I tried to get her out of the house. She hated that she couldn’t go and do anything because of her pain. She loved her Jeep, and when she was feeling ok, she’d drive us around with the top and doors off. It gave her some freedom. We’d sometimes go to the local classic car show and walk around because she loved cars, but as her health got worse, she spent a lot of time in the hospital or stuck at home. She loved to paint, and she painted a whale shark for me, one of my favourite animals. She was trying to paint rocks with superheroes on them for the upcoming Relay for Life that she was part of. She loved Wonder Woman, and I told her she should go to it dressed up as her since others were dressing up too. She said I’m no hero. I said you’re strong as hell. Years of abuse from her parents and partners had eroded her self esteem. It was sad the way she talked about herself. She was a single mom who had overcome a lot. She saw no worth in who she was because she was surrounded by people who made her feel like shit.

She had a really difficult relationship with her parents. Sometimes she told me traumatic stories over and over again, because she just needed to. A story she told a lot was the one about being diagnosed with cancer at 17. She had a lump in her neck, and she kept telling her parents she was worried about it, but they did nothing. It got bigger, so they finally made a doctor’s appointment for her. The doctor thought it was nothing. M wasn’t convinced. She wanted a second opinion, but her parents didn’t do anything. One day before her senior prom, she noticed she couldn’t even get the necklace she bought around her neck. She was struggling to breathe at night. She finally convinced her parents to get a second opinion, and that’s when she was diagnosed with Hodgkin’s. The tumor in her neck was huge. She had multiple surgeries and radiation. Instead of enjoying her graduation, she spent most of her time in the hospital. Decades later, she was still angry at her parents for ignoring her requests for medical help when she had the tumor. She believed that it wouldn’t have done so much damage if it had been diagnosed sooner. It was extremely painful for her to think that she wouldn’t have needed as much radiation if her disease hadn’t been left untreated for so long. The radiation is what caused her terminal illnesses later in life, so it was understandable that she was angry. She would also tell me that her mother didn’t clean or cook for her, and I tried to help her get another PCA and break away from her parents’ control. She had failure to thrive because she didn’t eat enough. It was hurting me to see her suffer. I’d bring her food whenever I could. She needed nutrition that was easy for her to chew and swallow, and her mom didn’t seem to care. Her parents continued to act like she was a burden to care for until the day she died. I was so angry at them, but she didn’t want me to talk to them about her care.

Unfortunately she’d spend hours talking about her parents’ emotional abuse and neglect, and it was beginning to really trigger me. I felt bad, but I had to set boundaries and say that I couldn’t hear about it anymore unless we took steps to get better care for her. But she was afraid to change anything because she was afraid her parents would stop talking to her. It was obviously a difficult situation because she was dying, and she didn’t want to lose them. I felt so bad setting those boundaries, but she said that she admired me for putting my foot down and sticking to it. She wouldn’t always listen to my boundaries however, and she continued to talk about their mistreatment of her. I was going through a lot at the time, because I’d just called my parents out for abusing my nephew. I had to set those boundaries. But she wouldn’t listen, so I was distancing myself from her a bit. She knew it was affecting me, and she felt bad. Then she ended up in the hospital again with pneumonia. It was around the time the pandemic was getting worse, and she said she was in isolation and scared. I said, you’re at one of the best hospitals in the world, they’ll keep you safe. I think she had covid-19 and didn’t tell me. The night before she died, she texted me that she had breathing problems. I didn’t text back right away, because that was common for her and I was putting my daughter to bed. A few hours later, her daughter texted me that she was doing badly. I knew that the hospital wouldn’t let me go visit her, and I was honestly in denial that she was dying. Her text didn’t seem to convey the urgency of the situation, so I didn’t see it coming honestly. She didn’t want me to worry, and denial is a powerful thing. The next morning, her daughter texted me that she was gone, and I was in shock. She said thank you for what you did for my mother, she loved you. I felt so bad for her kids. They’re 16 and 19.

At first I was in shock, and I cried for a little while. But then I dissociated most of the pain. The problem with DID is if something is too painful, I dissociate more. I became numb. I couldn’t feel good or bad emotions. People with DID will swing from hyperarousal of the nervous system to hypoarousal. In a hyperaroused state, I often have extreme anxiety, agitation, panic, fear, seizures, etc. Hypoarousal looks like slowing down, numbing of physical and emotional pain, slowed cognitive abilities, and even paralysis. The trick to healing from trauma and grief with DID is to stay within your window of tolerance. This means trying to have you and your parts work on small pieces of a memory at a time. If it gets too painful, it will overwhelm the system, and we’ll be swinging between the two states I described. No real healing can happen in those states, that’s why it’s critical for therapists working with DID to teach and encourage patients to stay in their window of tolerance. Sometimes I ask my parts to give me 10% of their pain, because feeling 100% of it is overwhelming. Same with flashbacks, even a few seconds of seeing it is really difficult. We’ve been numb for a while, so it’s time to have parts who were attached to M feel some of their pain. We talked to our therapist about her this week. T helps us with all our reactions to M’s death, and she validates our pain.

I know that M will always be with us. A week after her death, I went for a run around the local college track, and there was the Relay for Life banner that said hope. I realized that was supposed to be the site for the event this summer. I felt her energy with me, I can’t describe it. Sometimes I feel Jenn around me too. Maybe it’s just certain parts that are activated and thinking of them, but I like to believe that my friends are with me. I hope M is running through a field with her dog and ex husband somewhere, in some other realm. I hope she realizes now how amazing and strong she was. And I hope she knows how important she was to me. Missing her hurts a lot, but I have to feel the pain and allow myself to cry when I can. I know she’s not in pain anymore, and I like to think of her at peace now.

To the friends I’ve lost: Fly High M.R., J.F., E.L., M.T., J.D., and C.S.

The whale shark she painted for me
M sent this to me. It makes me cry, but I’m grateful to have known her.

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