trigger warning: nicotine/cigarette addiction, hospitals, life support, potential anxiety medication side effects
My godmother is addicted to smoking cigarettes, struggles with depression and anxiety, and is socially isolated. She’s been doing less and less and getting tired very easily. She’s been in and out of the hospital with respiratory issues, but this time was extremely scary: at one point on Christmas Eve she was actually turning blue!
I hate hospitals. I watched my father deteriorate when he was dying from lung cancer in a hospital. I was powerless. I could do nothing to help him, my other family members, or even myself. The environment inside (traditional) hospitals is the worst for healing. There’s a whole awesome movement – arts in healthcare – to transform hospitals into healing environments with natural light, curved surfaces, open spaces, pleasant colors, nature scenes, less toxic noise… but I don’t think they’d even started researching that stuff when my father was in the hospital. And the hospital where my godmother currently is has never heard of it, either. This hospital is a contender for a version of Hell. We would have wandered lost in a maze of spaghetti box hallways in drab colors with ominous doors and incomprehensible signs for hours if the nurses hadn’t decorated the area around their station for the holidays. When I saw that I said, “Let’s go toward the bright colors before I have a panic attack.”
When we arrived on Christmas afternoon, my godmother was on her back with a mask suctioned to her face, practically forcing her to breathe. I wasn’t sure if she was conscious. She squeezed my hand with a pulse. When she tried to talk I couldn’t even make out syllables, never mind words. She sounded so small and scared. We told her we were here and we loved her and spoke to each other in hushed voices. I tried to find a song on my phone that she might like, but my data connection was limited and the songs that came up weren’t exactly conducive to healing – for her nor anyone else in the room. I felt foolish as well as powerless.
The hospital staff were talking to her father, brother, and son about putting a tube down her throat that would require her body to make even less of an effort to breathe. Life support. I don’t know what her or their views on life support are, but in my mind it’s worse than death. If a person dies they can be at peace and the family can mourn. Existing for god-knows-how-long on life support is just torture for everybody. There’s no peace, no healing, no recovery, no closure. Just life-destroying medical bills.
I didn’t even need to express my views; the family members with the right to make such a decision made it clear that it was unacceptable. Her brother and son told her she needed to try breathing on her own, it was the only way she could recover so they’d be able to take her home. She was scared, but they convinced her to switch to a mask that would just provide extra oxygen – without forcing air into her lungs. We were asked to leave the room; I was an emotional wreck.
I don’t even know how long I was folded in the cocoon of Fox’s arms, while he worked some kind of magic, before I was able to relax. It was amazing! When I stepped back and looked at him I felt calm, grounded, like my whole world wasn’t shattering.
With the new mask my godmother was awake and able to speak coherently. She wanted to sit up – to stand even! The nurse and everyone else kept telling her she’d exert herself too much and she was fine lying in bed, but she wouldn’t hear it. I asked her why she wanted to stand and she said the wires and tubes they had attached to her were pressing on her chest and neck. As far as we could see they weren’t, but she insisted. After some more back-and-forth, she sat up – practically without assistance.
Only then did her complexion approach normal and she said she was feeling better. She asked for water and talked with us, even smiled at our jokes. I felt connected with her and inspired by her determination as I watched her work to hold a seated position – without back support – and to breathe. In a whirlwind of “you need to do this” and “you look like this” and “are you sure you don’t want to do this” I did my best to remain the voice of empathy. “How do you feel?” “What do you want?” “Is this helping?” “I can relate.” She really seemed to appreciate it.
Physically, she was working to breathe and she said she felt like shit, but otherwise everything was normal. Her lungs are okay considering how long and how heavily she’s been smoking. Her resting heart rate and blood pressure were a bit high, but not enough to cause concern; her blood had plenty of oxygen in it.
But her anxiety was through the roof, to the point where if we weren’t there comforting her it would have interfered with all the physical stuff. In the moments when she was able to retreat into her own thoughts, we could see the pain they were causing her on her face. Guilt. Self-hatred. Anxiety. The realization that she could have died. Knowing she has to give up the one thing that’s been consistently there for her through loss and change and loneliness and the most difficult times. She’s tried to quit smoking and failed because overcoming the chemical addiction to the nicotine isn’t enough. She needs emotional support. She needs something to replace the role the cigarettes play in her life.
The solution she was handed was “Don’t be anxious.” I looked her in the eye and said, “Yeah, but how?” I told her about anxiety goggles, the idea that sometimes it’s like someone has put these goggles on me and everything seems overwhelming and I’m lost and I don’t know what to do and I can’t imagine how the world would look without the anxiety… but if I remember that I’m wearing the goggles I can think, “Maybe it isn’t as scary as it looks right now. Maybe that thing that seems so horrible isn’t as bad as I think. These goggles are distorting my view.” and I can try to separate myself from it. I wanted to suggest meditation or something she could do to channel the anxiety out somewhere or something, any of the number of measures people have suggested to me and I’ve found helpful. But it was hard to think in that room, hard to get my voice in among the people saying “Don’t be anxious,” and I felt a bit self-conscious about it, too. Would my contribution be taken seriously? More importantly, would she actually find it helpful?
My godmother requested a particular medication for anxiety – not the one the hospital staff seemed to want to use because that interferes with her breathing – so a doctor came in to talk about it. He said something to a nurse about giving the patient her medication when the family leaves, because that’s when she becomes the most anxious. When my godmother told him about the medication she wanted, he expressed concern because “it could cause your stomach to expand and force anything in it to come up and you could choke on it.” “Well, that’s not a problem, I haven’t eaten in three days.” “It’s still a concern. You could suffocate on your own secretions.” A doctor seriously told his patient who was struggling to breathe moreso due to anxiety than any physical ailment that she could suffocate on her own secretions! I don’t even have the words.
Self-consciousness be damned. I raised my voice to make sure he could hear me. “Let’s lower the anxiety in the room please!” I asked if they had any interventions for anxiety other than medication. He said he’d have the psychiatrist evaluate her. I backed off, mostly because I didn’t know what my godmother wanted so I didn’t feel comfortable trying to speak for her. I also didn’t know if the kinds of interventions I could think of would cost the family more than they could afford. But I don’t think – and I didn’t at the time – that she needs a psychiatrist. I learned later that the psychiatrist had already seen her and clearly wasn’t helpful. In the time since that moment, I’ve refined what I wanted to advocate for: someone to calmly inform her of any available alternatives to medication for managing her anxiety while in the hospital, and to follow through on whatever she said she thought would be the most helpful. Bonus points if they could also give her resources for when she leaves the hospital. Someone to listen to her. Why oh why would no one else listen to her?
Hours later, after she had decided she wanted to lie down and we had left to go have dinner, I learned that her son had been permitted to stay with her overnight. The nurse had advocated for it. I was so relieved to know that at least one need could be met: he was better than all the rest of us at noticing when she was retreating into her mind’s torture chamber. He could pull her back out of it.
Overall, I actually consider it to be a relatively positive Christmas experience. I got to connect with family members I’ve been feeling disconnected from, talking and joking and being honest with each other. We didn’t have TV or other convenient distractions; we were each other’s distraction from the hospital. We were there for each other.
Music was supposed to make me invincible, but it didn’t. My cousins’ compassion and determination – and her courage – were what got my godmother breathing on her own again, sitting up and conversing with us. All my years of schooling – and maybe even the lifelong involuntary therapist training – were worth it, because in the middle of hell with all of everyone’s (especially my own) anxiety I was able to help someone by empathizing with her. By being with her in that moment. By being honest about my own vulnerability. And by speaking up. It was a valuable learning and healing experience for me.
All I’ve heard since is that she’s still in the hospital. She texted hugs and kisses to Mom; when Mom asked if she could talk she replied “no.”
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