The Dilaudid Diaries: Lessons From a Five-Day Hospital Stay

On August 16, 2016, I woke up for my daughter’s first day of kindergarten with a mild throbbing headache. I had worked the day before (I’m a psychotherapist) and felt tired but otherwise fine. There was stress involved with getting my firstborn daughter ready for school, so I assumed it was the cause of the headache. After we did the emotional first-day-of-school rituals, we had to run some errands. My head began to hurt worse and worse, and I asked to go home. As we drove, we hit a bump in the Jeep and I felt searing head pain and saw fireworks behind my eyelids. From that point on, I was in severe pain. I went to bed and stayed there for 24 hours. I became nauseous and was sick all night, and it increased my headache each time I threw up. Any movement would send a fresh wave of pain through my head: sitting up, rolling over, standing, talking, and any light whatsoever would have me in tears.

I went to Urgent Care the next morning and they said it was either a severe migraine or something much more serious. They treated me for a migraine and said if I hadn’t improved in two hours to head to the ER. Three hours later, my husband and kids and I were on our way to the ER, as I felt even worse than I had before the Urgent Care trip. They fast-tracked me in the Emergency Room because they thought I had a subarachnoid bleed in my brain. The CT was negative for a bleed but showed swelling, so they performed a spinal tap. The spinal tap showed acute and severe spinal meningitis, and they pulled four additional amps of cerebrospinal fluid out of my spine to alleviate the pressure on my swelling brain. I was admitted to the hospital and was in isolation for the first two and a half days in inpatient as they were concerned I may have bacterial meningitis, but the results were viral, which is much less scary and has less long-term ramifications than bacterial meningitis does. I spent five long days hospitalized and was followed by many doctors. I begged to be released on the last day because I was getting no sleep and felt as though I could heal better at home. They were very hesitant to allow me to leave as I was still very symptomatic, but thankfully they released me after many promises to rest and recuperate for at least two weeks.

Meningitis is much worse than I ever thought it was. It completely took me DOWN. Aside from the massive headache and stiff neck, I was experiencing cognitive impairment in the form of memory loss, less-than-coherent speech, visual distortions, and at one point I was hallucinating. As a psychotherapist specializing in medical issues (cancer, major illness, medical trauma), I am passionate about teaching people how to support each other in times of crisis. I work with people in the deep dark throes of cancer to help them become more emotionally resilient and how to do life in the new normal. Here are three important mindsets I work to impart upon my clients that were reiterated in my acute illness experience:

1. Emotions will happen, and being positive through it all is unrealistic.

This was a common theme in nearly every one of the 200-ish cancer support groups I ran: everyone wants me to be positive and it’s driving me crazy. I created a presentation on “The Pressure to be Positive in Cancer” and people loved it. I did it several times at Gilda’s Club where I worked, and people began bringing their entire families to it. I was asked to give the presentation at local hospitals, nursing organizations, hospice groups, and was asked to take part in a televised Cancer in KC panel with local cancer experts. I realized that people were HUNGRY for information that allowed them to be human! They craved permission to feel the yucky feelings that are present in every day life, and magnified in cancer. Friends, we aren’t 100% positive on a regular day. Days are full of both good and hard emotions. Cancer and illness are naturally terrifying, and they also impact your physical wellbeing to the point where optimism goes out the window for periods of time. It is impossible to think positive when every bone in your body hurts and the pain medicine is doing nothing. It is hard to look on the bright side when you have a post-op infection that is ravaging your surgical site and threatening to force you back into the hospital. It is very normal to be angry, sad, frustrated, and afraid in these situations. Telling someone to stay positive, fight harder, be happy, etc. will often have the opposite effect. It will often shame them because they aren’t feeling strong, aren’t happy, they feel horrible, or they are scared. Demanding they feel only positive things will actually have them withdraw from people and feel bad about feeling bad.

Personally, I want my friends to be real with me and I want to be able to be real with them. I want them to tell me how they really feel and what they truly need from me. I have friends who can handle that, and they handled plenty of frustrated word-vomit from me while I was hospitalized. They allowed me to vent and be honest with how I felt, and I desperately needed that space. The most important thing is that hey didn’t move into advice-giving mode. They listened, said, “I’m so sorry friend. This just sucks.”

Feeling negative emotions isn’t a bad thing and it means nothing about you. If anything, it means you’re a normal human being who experiences a full spectrum of healthy emotion. The truth is that if we ignore the bad feelings, they begin to RUN us and our interactions. If we pretend we aren’t scared, we find ourselves welling up with tears when they are drawing blood or when you’re being run through the CT machine. If you pretend you’re not angry, you’re snapping at your husband or getting snarky with the nurse. Fred Rogers said, “When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary.” It is better to take roll-call of those negative feelings and let them be there than to ignore them and move forward with forced optimism. Be warned, some can’t handle this kind of authenticity. I am a proud feeler of negative emotions, and most in my life know that, but it makes people uncomfortable. I have decided that it makes people uncomfortable mostly because they don’t know how to “fix it,” it makes them feel helpless to not be able to make me feel better. The truth is that I don’t need to feel better or be distracted from the truth about my illness. I need connection and authentic support.

If the negative emotions threaten to overwhelm you, lock yourself in your room and set a timer for 10 minutes. Allow yourself to sob, yell, cuss, punch your pillow, whatever you need to do. When the timer goes off, take some deep breaths, smooth your hair, and try that positive thinking thing again. You’ve got this.

2.  Eliminate thoughts about “what does this mean about me.”

We have two choices: live in the moment and ask for what we need, or live in the “what does this mean about me” fog. For example, I desperately wanted out of the hospital on Sunday, day 4. I had been cutting back on the IV Dilaudid, convinced that no matter how much pain I was in, I could manage it. I went 8 hours without any pain medication, convinced it would mean I could get out that evening. I began to feel absolutely horrible, and the pain in my head became unbearable. I got lost in the worry about what it meant about me that I needed the medicine: was I weak? Was I a baby? Was I sabotaging my opportunity to go home? I had a fantastic nurse that day who came in as I was sobbing in the hospital bed. She sat with me and listened, and said, “Caylen you’re very sick. You need to be in the hospital and you need the medication. Needing the medicine means nothing about you other than the fact you have a serious acute illness. You have to be honest with yourself or you’ll just be back in the hospital and even more frustrated. “ She came back with the pain and nausea medicine and within a half hour the pain was tolerable. I realized that the ego had to be put away, that I’m not stronger than the meningitis-induced headache, and that nobody was asking me to be. I was putting it on myself, and if I continued to do that and resist the illness, I would continue to be sick. The next day, the doctor and I had a long conversation about the duration of viral meningitis, what is happening in my brain, and how I could possibly manage the symptoms at home. He made me promise that I’d take recovery very seriously and would pay close attention to my body, and only if I promised to take this very seriously would he allow me to leave.  Even the doctors wanted for me to be authentic and honest with how I felt!  They wanted me to be honest with myself, not to deceive myself with the desire to prove that I’m strong.

3. People will want to help: LET THEM!

Whether it’s childcare, house cleaning, giving updates, helping with work, or bringing food, people will offer to help you and your family. That ego pops up again and says, “we don’t need help,” or you will not want people to go out of their way for you. Not only are you cutting off the help you most likely need, you are cutting them off from serving you. People want to help, and it takes nothing away from their lives to allow them to do so. The scarcity mentality says that there is not enough time, money, energy, etc. and that if people give any to you, it takes it away from their own families and it’s simply not true. Often times a cancer diagnosis or major illness will send shockwaves through communities and they will rally behind you, just as you would for someone else. There will be loved ones from afar who want to help, and aren’t able to do what your proximal friends can do, and want to donate money. Please consider allowing someone to do a fundraiser for you! I was against the idea to begin with, as was my husband. There is that, “what does this mean about me” mindset at work again. Was it tacky? Was it in poor taste? My friend Merritt looked at me like I was being ridiculous and told me that people would WANT to donate to help out my family. She also reminded me that life without a month’s worth of pay was a very real concern, as I’m self-employed with no short-term disability insurance at all. Me not being in my office providing psychotherapy meant me not having an income. She wrote a beautiful and humbling narrative, and we went live with a modest goal ($2500). We met that goal within 24 hours, and I was completely blown away by the generosity of every single person. Friends, fellow firefighter families, friends of our parents, and even friends of friends who don’t know us threw in some money.   A local non-profit who is dedicated to helping families knocked down by illness donated $500 simply because they follow the fundraising sites and their mission is to help families in need. I sat in my hospital bed and cried happy tears as I checked my email and had 30 messages notifying me of various donations because I felt so incredibly loved and supported. It was the silver lining of the entire experience.

My hope is that this post touches someone experiencing a chronic or acute health issue.  I pray someone reads this and says to themselves, “I’m not crazy, it’s okay to be mad I have cancer!”  Please be gentle with yourself as you experience whatever journey you’re on.  This goes for caregivers too:  let people take care of you as you care for your loved one!   Let people lean in and support you. Find local support groups for our particular illness.  If you need hep with that, reach out to our practice at http://www.bedfordtherapygroup.com and we will do our best to assist you in finding support.
BEST WISHES!