• Megan Rose

To die, to sleep

In addition to bipolar disorder I have narcolepsy, which means I have trouble sleeping during the night and am always tired and need lots of naps during the day (even medicated). I'm always tired to some degree - sometimes I can fall asleep and nap and I feel a little better when I wake up (usually if I'm really tired I feel feverish - I get chills and get sweaty, hot, and shaky), and sometimes I'm really tired but just can't sleep at all.

Today I'm tired but I can tell it's not from the narcolepsy - it's a depression type of tired (which usually means I'm unable to fall asleep and can't just sleep through it like I would like).

But sometimes when I get depressed I start to think about how nice it would be to just be dead. This is not a cry for help - I am not suicidal, I don't have suicidal thoughts, and I don't want to kill myself. I'm Catholic and I believe in God and heaven and I can't help but think how nice it might be one day when I finally fall asleep for good and wake up feeling like a normal person - like a normal person on a really good day.

I don't remember what it's like to not be tired. I don't remember what it's like to go weeks and weeks feeling good and energetic and happy. I don't remember what it's like to wake up early in the morning and stay awake all day and not feel sick. I don't remember what it's like to experience life as just a person, not a person with bipolar disorder or narcolepsy or a seizure disorder. I just want to go to sleep and wake up to a world where I feel good, where I can do everything I want to - everything I used to do and be able to do, and make it through the day and the week and the month and the year without having setbacks and frustrations and feeling like I'm capable of doing so much more than I'm able to do.

When I was little I drew what I thought heaven looked like - it was a huge room made up of golden bricks. (Mostly I was excited to use the new gold crayon.) When I think about heaven now I think about me in my little apartment with my mom, waking up early and relaxing, doing fulfilling work that I enjoy, going out and doing things without fear of being stuck there when I don't feel well, making plans with people and sticking to them, having a day full of activities that I am able to do and feel well at the same time, and then being able to relax at night after a full day of work and play as opposed to relaxing at night after a few hours' worth of work, some of which is just me trying to function.

When I think of heaven I think of feeling healthy. When I think of heaven I think of feeling happy. When I think of heaven I think of feeling productive. When I think of heaven I think of achieving my goals without the struggles with which my disorders weigh me down.

I think about sleeping through the night. Falling asleep when I want to, waking up when I want to, and being able to stay awake the whole day and feel good. I used to always think that if I had a genie and three wishes, that would be my first one.

I know I've accomplished a lot in my life despite my disorders, but that's just it: I don't want to accomplish a lot despite something. I don't want to accomplish a lot for someone who has these roadblocks. I want to accomplish a lot period. I want to live my life doing the things I love, making myself proud, and achieving goals that I've set for myself that don't have to be edited and stripped down to their bare bones because I have bipolar disorder or because I have narcolepsy.

There are so many things I want (or wanted) to do in life, and I feel I always start things without finishing, but it's not for lack of motivation - it's because I go through times in my life when I do feel somewhat normal or maybe even a little hypomanic and I'm able to get more done than I usually do and, try as I might not to, I convince myself that's the new me and I'm going to feel that way forever. I tried to start a baking business with my sister. I know my ideas were good, I know we could have been mildly successful, but after having a few good days and cranking out 12 pans of cinnamon rolls in two or three days, I lost all momentum and struggled to get the rest done, resulting in me canceling one of the orders altogether.

I started a nonprofit where I taught kids. That lasted for many years, and it is still in existence, but I stopped teaching a while ago because it was draining and I was having trouble making it to lessons and classes on time because of my unpredictable sleep schedule.

I started creating a web series. I got a group of actors together, had some leads on camera people and editors, met with the actors to create a trailer, worked on the strategy for the Indiegogo campaign, met virtually multiple times, and (although COVID also interfered) things have come to a grinding halt as I don't have the energy to work on it plus my sleeping schedule has been so out of whack I'm unable to commit to a time to meet.

Before I thought of having a baking business I called up my local homeless shelter and asked them if I could make birthday bags for their residents every month - every month I'd come in with bags of baked goods for people's birthdays. I didn't even do it once. I did bake some things and bring them in for everybody to share once or twice but it wasn't what I had planned on doing.

I worked at a restaurant so close to my house I could walk there. I was a hostess. I was not incredible at my job but I was reliable, polite, and professional so I know the management considered me a pretty good employee. I worked there for almost a year. I quit because of COVID, but I think I would have wound up quitting anyway. It was too draining. I worked three or four nights a week and the day after I worked a shift, I would spend the whole next day on the couch unable to do much. I was making minimum wage and the toll it was taking on me was not worth the little bit of money I was making.

I trained to become a Salesforce administrator online - I took the free online courses and began learning how to use the software so that I could get a steady job working from home, but I stopped doing that after a few months, although I can't remember exactly why except for the fact that I was partly worried that I'd have to attend virtual meetings early in the morning.

I spend a lot of my days in bed or on the couch - sometimes working on my writing but sometimes I'm just resting. I make videos for a homeschool website, but even doing that is a struggle and it's something I completely control all on my own. I tried to quit because it was a lot of work and I was having trouble keeping up, but they liked my videos so much that they offered me a raise to continue producing videos for them so I agreed to stay. It's definitely a good thing that they liked my videos that much, but the fact that I wanted to quit doing something that I enjoy, that's in my wheelhouse, that I have complete control over, makes me feel helpless to my own disorders.

I don't want this to come off as self-piteous or whiney or attention-seeking. I don't mean this to be a post full of complaints, because I know I am very lucky in very many ways. I just can't help but think sometimes how unfair this disorder can be and think about the things I could be missing out on because of it. I decided to write this blog post in the hopes of reaching others who might feel the same way and giving them someone to commiserate with. I decided to write it because I needed to get my feelings out in a healthy way and communicate to a supportive audience how I was feeling. And I decided to write it because I'm so proud of all of the things I was almost able to do even though I wasn't actually able to carry most of them out. These goals I had set for myself, whether I achieved them or not, are proof of my ambition, and that's something I think a lot of people don't think I have much of. I have so many ideas, so many hopes, so many dreams, so many goals, so many things I want to share with my family, with my friends, with the world, but my disorder often gets in the way of me completing these tasks and it's frustrating to know that I have so many plans in my head that no one will ever know about.

Some people might say not to let my disorder get in the way of doing things I want to do, of doing things I have to do, of making a living for myself. I used to think that same way until I went through a period of time where I accepted jobs and began tasks and wound up unable to finish what I started. I began having a reputation as someone who would quit things halfway through, and of course the people I was working for had no idea why because I didn't want to explain it to them (partly because I felt as though they wouldn't understand, partly because it was none of their business, and partly because I was embarrassed and just wanted to get out of everything quickly and sever ties so I wouldn't have to deal with any fallout).

I taught at a small school for a few weeks then had to quit because I couldn't stay awake through the drive there; I was music director of a summer theatre program for a few weeks but had to quit because I couldn't get myself off the couch to arrive on time and was never prepared to teach the kids; I left college after my second year because I had just been diagnosed and after months and months of trying to push through I found I was simply unable to keep up; I attended community college part-time years later but had to leave because I couldn't wake up early for my general education courses and I couldn't concentrate on the classes and I just wasn't doing well (despite being an honors student throughout high school and making the Dean's List in college); I was vocal director for a summer theatre intern program and quit halfway through because I found myself feeling uncomfortable around my peers (feeling like they were always judging me, which they probably were because I was going through a difficult time with my illness and wasn't always reliable or completely coherent) so I quit one day after leaving rehearsal early in tears and falling asleep as soon as I arrived home; I attended a meeting for that same program earlier in the year and had a panic attack halfway through and had to go home (which meant the director had to leave and miss most of the meeting because he had driven me there); I created content for a bipolar webpage until I ran out of steam and ideas and stopped submitting things; I decided to attend more family events and after a few gatherings decided it was so draining and difficult I had to say no to a lot of things my family felt were important.

So, no, you shouldn't let your disorder take over your life or control you, but at a certain point you have to recognize your limits and do what's best for you and what's best for the people you're trying to work with. Not only will you leave people in the lurch if you're unable to finish working with them, but you make yourself look bad and unreliable and begin to get a reputation as someone who is unprofessional, which can lead to you being rejected for something that may have actually been perfect for you.

I suppose I don't really want to go to heaven right now or am looking forward to dying, but sometimes I tear up at the idea that somewhere, someday, somehow I may be able to live a normal life and feel good all the time. I don't want to die tomorrow, but I'll be happy when my time comes to know that I'm about to embark on a journey where my soul can finally be at peace and be what it was meant to be.

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