By Rachel Doboga

When discussing my fear of death with my beloved and brilliant therapist, he pointed out that I am often so focused on my fears and anxieties that I miss out on the present, on enjoying my time with Evan and my dogs because I am so worried about the future, on the joy of corresponding with loved ones because I am nervous that I am taking too long to respond to their letters, and so much more.

My anxiety hops around from topic to topic so I am always consumed by it. Now, I’m preoccupied with death and the afterlife. He advised me to focus on the now, and to “let death take care of itself.” Easier said than done, but I have to try because, as my grandma used to say, “Yesterday’s gone, tomorrow isn’t here or guaranteed, so all we have is today.” This is especially true for someone like me living under the shadow of a terminal disease.

After my most recent therapy session, Evan and I talked a lot about faith, death, and the afterlife. I told Evan, “Something you said really inspired me. You said when you are afraid, you push yourself towards belief. I never thought of belief as a choice. I always thought of it as something that happened to me. It’s empowering to think I could choose to believe in an afterlife.”

Something else that is helping me let go of my all-consuming fear of death is a little wisdom from my best friend. Melissa suggested giving that terrified part of me some love and attention. She advised saying something like this, “Thank you for your concern. I hear you and you can relax now.” That really helped me put my fear in perspective as something within my control.

Last but definitely not least is some advice from my mom. My mom always says, “Worrying is not preparing.” At first, I thought that meant “Create an action plan!” Now I understand it means “Worrying doesn’t help you, so stop!” I have to remind myself of that constantly, kind of like a mantra I guess, but it really does help me regain control of my thoughts and fears and return to what is right in front of me. Sometimes when I am especially anxious, my mom even texts this advice to me! Along the same lines, one of my aunts told me that the Bible says, “Who of you by worrying can add a single hour to his life?” I am lucky to be surrounded by so many wise people.

Now I use meditation and mindfulness to live in the present. How I practice mindfulness lately is I try not to multi-task. I ask myself what I want to remember in that moment and give that my attention. For example, I stop whatever I’m doing when my dog Malka enters the room and focus on the sight and sound of her. I love the way she plops down anywhere for a nap (usually in the way of my medical equipment or right behind someone’s feet), and when she settles in, she sighs like she’s the president of the world and has to end climate change, famine, and war. I enjoy the feeling of her coarse fur when Evan takes my hand and helps me pet her. I take her in with all my senses because I won’t have her forever, and she’s far more important than checking my email.

I’m pretty sure I am not practicing mindfulness correctly. I just know you’re supposed to find something to focus on in the present, and this is how I do it – by focusing on one thing at a time with all my senses. Mindfulness also helps me deal with the nastier parts of ALS. I focus on Evan’s deep blue eyes during frightening trach changes, and when I’m in pain, I try to give all my attention to the place where he squeezes my hand.

Meditation is my other main tool for letting go of anxiety and returning to the present. Frankly, I am not very good at meditation, but my uncle, a Zen Buddhist, swears by it, and he’s a pretty smart guy! I have noticed that the more I meditate, the better I feel, at least in the moment. Many types of meditation require deep breathing, but I can’t really control my breathing well enough for that because I am on a ventilator. The two types of meditation my uncle taught me, take place solely in my mind, so those are what I use.

The first type is what I call “The Fisher.” You pretend you’re standing in a stream full of fish. You try to calm yourself, but if you’re anxious and fearful, intrusive thoughts are bound to come up. Each intrusive thought is a fish. Notice the thought and pick up a fish, acknowledging it by saying something like, “I see and understand you, but I don’t need you.” Then put the fish down and watch it swim away. Do this until there are no more fish.

I don’t have a name for the second type of meditation. It is just counting breaths, but you have to start over each time you have an intrusive thought. It sounds frustrating, but it’s oddly soothing. My intrusive thoughts tend to be about money because Medicaid monitors our finances and restricts how much we can save; Evan’s wellbeing, especially after I die; and of course, about my own death. Being able to let go of these worries, even temporarily, gives me some relief.

I don’t want you to think my anxiety issues are fixed and gone because I practice mindfulness and I meditate. I rely heavily on therapy and medicine. I take many anti-anxiety medications, one in the morning and one at night, and I have a fast acting one for emergencies. However, while I’m still afraid of death and I’m not sure about the afterlife, my fear and uncertainty no longer consume me.

I think there are several reasons for my progress. Telling the story of my roller coaster of faith and doubt in the first part of this series was tough and sharing it was scary, but I think it was ultimately therapeutic. Hearing the vastly different beliefs of my loved ones about what, if anything, comes after death reassured me that everyone has their own faith journey. Finally, the wisdom of those closest to me and my new coping skills have helped me let go of my fear of death a bit and focus on the present. I may have ALS, but ALS doesn’t have me.

I was surprised by this third and final segment of the series. I originally planned to write only two parts, but my journey through this topic has given me a degree of peace at last.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing.

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com