Note: I'm putting this in my blog because I know it's not book material, but it's my best shot at writing for almost two weeks, and I'm sure I said some important things here and there while I rambled on that should go into my memoir. Also, it just feels good getting stuff off my chest that's been there for awhile.
I’ve been feeling pretty badly lately. I know I should be nothing but ecstatic and at peace, knowing I have my physical health under control. Prior to Trikafta, my physical health wasn’t improving. It got worse more than it got better, and in many more ways than just a few. So, people could easily understand why I was always anxious, and usually didn’t get upset when I was.
But, now that I’m on Trikafta and my physical health has greatly improved, my mental health tanked and very few people are still as gentle and understanding as they once were. After all, I should be happy and at peace. I have my physical health under control, things are peaceful within the family, and I have good friends who deeply care about me. What is there to be distraught about?
Truth is, I’m tremendously overwhelmed by the amount of change that has happened in just the last few months or so, let alone in just the last few years. On top of that, I have a lot to process and grieve over in my past. I understand that I’m grieving a fantasy. There never was a time I didn’t have CF or Pulmonary Atresia, and there's probably no such thing as the multiverse, so there isn't another copy of me in a different universe living the life I'm currently grieving over. But, I just can’t help but wonder what life would’ve been like if I was born with a normal, functional body.
Every time I discover something I can do now, that I was never capable of before, I can’t help but cry over the fact I missed out on that for eighteen years. I know I still have a long life ahead of me to enjoy the things I was once unable to enjoy, but I’ll forever be missing eighteen years worth in experiences I couldn’t have due to my condition. Eighteen years is not a short time to be missing out on so much, even when compared to a seventy or eighty year-long lifespan.
Unfortunately, nobody but myself seems to understand that. Everyone I know was born with a normal, functioning body, and most people I know still have normal, functioning bodies. Nobody I know was ever born into suffering like I have, and that makes me feel so incredibly alone. Words just cannot describe how utterly isolating CF really is, or what that isolation feels like. I can be surrounded by people who love and support me, but still feel completely crippled by loneliness.
And, now that my physical health has gotten so much better, I can’t help but feel awfully guilty for being unable to find any joy or peace. It doesn’t help that so many people, including many people who are close to me, have asked me why I can’t just be happy. I received a second chance at life. I quite literally have a new body. Why can’t I just be happy? Why can’t I just relax? Why do I choose to be so miserable?
It’s not like I’m choosing to be as anxious and depressed as I am. I hate my mental health issues so much more than anyone else. I desperately want to be bursting with joy and gratitude. I desperately want to be at peace. Yet, I just can’t force myself to feel good again, which is why I’m going on medication as soon as I can. Problem is, so many antidepressants interact with Trikafta, or are really hard on my liver. So, it’s going to be awhile before I get any sort of medicinal help for my anxiety and depression. For now, I’m stuck trying to fend off my worsening mental health issues with every single coping mechanism I can think of and find out about. So far, nothing is actually working.
I’m doing everything I know how to start feeling better again. I’ve asked for help and told a bunch of people I know and trust exactly what’s going on with me. I’ve been meeting up with my therapist and various psychiatrists weekly, and checking in with my parents daily to make sure I still have a shred of hope to hold onto, and a place to vent and discuss my problems, while I go through this rough time. Nobody really gets where I’m coming from, but they can sympathize with me, which is good enough.
I’ll soon be going on medication to help balance out any possible imbalances in my brain. In the meantime, I’ve been sticking to a routine that isn’t exactly strict, but it gets me out of bed in the mornings, helps me keep track of my daily needs, keeps the house clean, and my body exercised. I no longer drink caffeine, and have stuck to eating a very clean diet, full of fruits, vegetables, and fish. I’ve been leaving my house as often as I can, helping out with errands and chores, taking myself to lunch at various restaurants around town (especially Fontana Sushi), going to parks, hanging out at the mall, and just driving around listening to the radio if I have nothing else to do and don’t want to go home.
Basically, I’ve been doing anything and everything to keep myself from wallowing in my own misery as much as possible. Yet, it’s clear to myself and everyone who knows me, that I’m simply not doing well. I’m not myself. And, it sucks that I can’t just take the advice of a few distant relatives and just will myself out of this. Mental health has just as much of an effect on me as physical health, which is something I was very skeptical of until now, since a lot of my current mental health struggles tend to manifest themselves as physical problems more than emotional problems.
Just after this last writer’s group, I was pulling out of the parking lot when my heart just started racing and palpitating out of nowhere. Soon after, my legs started to tremble uncontrollably, and tears welled up in my eyes. I seriously thought about pulling over the next chance I had, but I knew that anxiety attack wasn’t going to go away anytime soon, and my mom was busy eating out with friends. If I pulled over, it would be at least an hour before she came to my rescue, and I didn’t want to sit in my car in the dark, miles away from home, alone, and in full-on panic mode. So, I started speeding and weaving in and out of traffic, hellbent on getting home before my anxiety got any worse (stupid, I know, but I wasn’t thinking clearly anymore).
Thankfully, I made it home, freezing cold, soaked in sweat and my own tears, and I didn’t stop shaking or crying for hours. This was all a physical anxiety attack. My mind was completely at peace. I wasn’t worried about much of anything. But my body had other ideas, and there wasn’t shit I could do about it, except for ride it out without fighting it. Fighting only makes my anxiety attacks worse and longer. So, I just had to feel it until I was finally relaxed several hours later.
I wish I could pinpoint exactly why this stuff is happening to me. I have my theories, which are probably correct, but I’m not completely sure. I wish I could know, with absolute certainty, exactly what’s been triggering my mental health struggles, so I could take the right steps towards healing the pain confidently, knowing for sure I’m taking the right steps towards a quick recovery. Instead, I’m just ruling things out, one after the other, making progress ever so slowly, as I continue to endure crippling anxiety attacks often multiple times a day without warning or reason, and struggling to put a coherent sentence together in my foggy brain. I’m only able to write now because it’s one of those rare times where I finally feel a little more with it. But, it won’t be long before the brain fog settles in again.
It’s been over a month since I admitted to myself and others that I needed help. When I did, my therapist/psychologist suggested I was suffering from depression just as much as I was suffering from anxiety. I was honestly shocked by that diagnosis, because I assumed depression always brought with it thoughts of worthlessness, hopelessness, and suicide, none of which I was (or am) struggling with. However, it turns out, depression is much more than just those three things I listed. Anxiety, irritability, anger, resentment, crying for seemingly no reason at random times, loss of interest in hobbies, brain fog, and grief, all led my therapist to diagnose me with depression.
Of course, almost as soon as I told my extroverted parents about my problems, it wasn’t long before other people I didn’t want to know about my problems started sending me unsolicited texts and social media messages, basically telling me I didn’t need medication, and/or my mental health issues were somehow my choice. I just needed to go outside, smile more, be more social, think seven positive thoughts every time I catch myself having a negative thought, ask God for peace, and more bullshit along those lines.
Nobody makes a person feel more alone and ostracized than those who simply think mental illness is a choice, that can be solved by going outside more or being more social. Also, nothing is more damaging than telling a person their mental health problems are punishment for not being close enough to God. I’m sure sunshine, social interaction, and a strong faith in God work to diminish mental health problems for some people. But, it’s clearly not working for me, because I have been going outside, hanging out with friends and relatives, seeking therapy and help, making sure chores and errands are done, praying to God and studying the bible, and so much more. Yet, I’m still struggling, and the problem isn’t getting any better.
Sure, some days are better than others, and there are times when I feel a little tinge of genuine joy and peace. But, again, those times are fleeting, and I spend more time pacing around my house with my hands on my head and tears streaming down my face, than I do laughing sincerely at a comedic movie, or actually relaxing without a worry in the world.
Also, anxiety never fails to wreck my outings. It hits me while I’m going for a run/walk around the lake at Clement park. It hits me while I’m in the middle of ordering my food. It hits me while I’m at home washing dishes. And, there was the anxiety attack I had while headed home from writer’s group. That was fucking gnarly, and my mom has since told me that I shouldn’t risk my life or car simply because I don’t want to interrupt her dinner with friends. Before y’all ask me why I wouldn’t leave my car in a parking lot and order an Uber, and then return in an Uber the next day to retrieve my car, I think the answer is obvious (I don’t want to talk to the Uber driver, like at all, especially when I’m as terrified as I was).
Social interaction has never been my forte. But, now I’m really struggling with it. I can’t even reach out to friends whom have reached out to me, and who I know are trustworthy and understand exactly what I’m going through. As badly as I want to, as soon as I find their name in my contact list, I just start to shake and lose all desire to send them any sort of text. Of course, the desire to reach out to them hits me again almost as soon as I put my phone down, but it ditches me literally the second I touch my phone again. The same goes with family.
I kind of know why this is. I don’t like asking for help. I don’t want people to watch me suffer. I don’t like showing my weaknesses to people. I don’t want to bother other people who may not want to be bothered. It’s just in my nature to keep those I love sheltered from my problems as much as possible, because I don’t want them to suffer anymore than they already do. I know this isn’t exactly healthy or right, and I’m working on changing that toxic part of me. But, change like that doesn’t happen overnight.
Thankfully, while I struggle to reach out to people, I’m very reachable. I’m well-known for responding back to texts and messages over social media instantly, unless I’m doing something that requires my undivided attention, or am sleeping harder than a rock, or have very good reasons to not respond to that message. Even though I don’t usually make the first move, I’m always reachable. I just wish more people knew that about me, especially now. I may not ask for help, but a simple “how are you doing?” text without any sort of “have you tried this?” bullshit will go a long way.
Also, on a completely different note, I did finish reading 1 Kings. Throughout all of 1 Kings, God didn’t lecture Elijah, miraculously cure him of his problems, or anything like that. After God made sure Elijah was well rested and fed, He commanded Elijah to walk for forty days and nights to a cave. I bet those forty days and nights were just as miserable for Elijah as the two days he spent sleeping under a tree.
The bible doesn’t delve into what Elijah’s journey was like, but drawing from my own, current experiences, Elijah was still suffering greatly, which means he was not having a good time during those forty days spent walking through the wilderness. And, even when he finally arrived at the cave, Elijah was still anxious, depressed, and angry at God. None of the miraculous events God did for Elijah, in the past or present, made him feel any better. Elijah just continued to complain, and it took a long time for him to feel any better, and even longer for God to convince him to actually go do something. Even then, God wasn’t rude or pushy about it. He didn’t ask Elijah to do anything until He knew Elijah was ready. As soon as Elijah was ready, God commanded him to go find Elisha, which gave Elijah something to do that kept his depression and anxiety at bay.
I feel a little better knowing that, while it’s going to take a long time for me to start feeling myself again, I will eventually feel better again. And, nothing I do now will cause God to even get upset at me. He gets it. Unlike so many people in my life, who I’ve been ignoring lately for good reasons, God understands exactly what I’m going through. Interestingly, as much as I’m hurting at the moment, and as alone as I feel, I don’t think I’ve ever felt closer to God as I currently do. For the first time in my life, my suffering has not pushed me further from God, but has rather drawn me closer to Him.
Still, the knowledge that what I’m going through is biblical, and God is right here with me, does not diminish my anxiety or depression even slightly. I wish it would, but as the story of Elijah shows, not even a slew of miracles or direct communication with God would make me feel any better in the long run. Sure, it might give me a quick emotional high, in the same way a go-kart race, a trip to the skeet shooting range, or parking my truck on a tall snowbank, gives me an emotional boost for a few minutes. But, those rare, short times where I feel completely separated from my mental health issues don’t last for long, and they certainly won't help me in the long run.
It sucks, but it is what it is. I know I’ll make it through this alright, just like I’ve made it through so much else in the past. I still have hope and confidence in the fact that I will feel normal again soon. It may take weeks or months from now, but I will survive, and I will get better. I just hope I start feeling better sooner than later, because it sucks to feel like shit, and I’d love nothing more than to feel lasting joy and peace, enjoy my life in a body that works better than it ever has before, and start writing for my memoir again. I took a break from writing for an entire week, and am now taking advantage of one of the rare times when I can string more than a few coherent sentences together at once, before that ability fades from me by tomorrow.
I’ll continue doing what I’ve been doing to keep myself together the best I can. Medicine is important, but not even close to being the only thing that will drag me out of this black hole I found myself in. I’m just gonna have to grieve, process, and accept my past, while continuing to take care of myself. I can’t avoid the grief. I can’t fight it. I just have to feel it and go through it. It will just take time for my mental health to get better as the grief slowly becomes less potent. I'll also find medication that works for me, but again, given the circumstances, that will also take time. Thankfully, it’s time I actually feel I have.
Having my physical health has relieved the pressure of time I’ve felt for so long. Just a few months ago, I was painfully aware that I had only about twenty years left or so, at least according to the doctors. Now, I have more than double that time to live. And, I can’t wait to feel better again so I can start actually living, and not just simply surviving while struggling through a midlife crisis at eighteen. After all, I have so much I want to do and accomplish. I just need to get my mental health under control, so it won’t get in my way as much as it currently has been.
On the flip side, without that pressure of time, I feel much less motivated to do things. Since I no longer have only twenty years left to live, I might as well slow down. In fact, my parents and therapist have encouraged me to just slow down and try to appreciate the littlest things right now. It's hard for me to slow down, but I've been forcing myself to. I don't need to travel three or four times a year to see the things I want to see in my lifetime. I don't need to rush to get into college or find a feasible career. I don't need to finish my book within (X) weeks. I don't need to be super paranoid about catching any flu or colds, especially since I had my first normal cold a few weeks ago, and only knew I had it because I was sneezing.
Also, I tested positive for Pseudomonas again (and it's in my lungs), and have started a new antibiotic treatment for it. But, the infection is benign. It didn't have an impact on my lung function or energy levels, and I don't feel any different two-and-a-half weeks into the antibiotic treatment (which is in nebulizer form). Knowing this, I am no longer anxious about getting sick, even with things like Influenza A floating around, and COVID-19 which has dominated the news with sensationalized headlines about how "scary" and "world ending" it is, which it's actually not. (An internet friend of mine, who has CF and lives in Hong Kong, told me you likely won't catch it so long as you wash your hands frequently, avoid touching your face, and avoid large crowds, all of which I'm an expert at. It's been two months since the virus first appeared in Hong Kong, and my friend is happy and healthy as can be, despite being a lot sicker with CF than I am).
I can just relax, which is really weird. I clearly have no idea how to relax. And, even if my mind is relaxed (mostly because I struggle to even think most of the time due to depression), my body isn't. Most of my anxiety attacks are totally physical and happen out of nowhere for no apparent reason. Of course, they are scary. But, I know exactly what I'm dealing with. When I first started having those surprise anxiety attacks, I thought my Pulmonary Atresia had come back to bite me in the ass. I mean, it wasn't a totally illogical thing to think. Knowing my luck, since I conquered CF for the time being, it was time to deal with PA again. But, that's thankfully not what was happening to me. I wasn't having multiple heart attacks or strokes a day. My PA is still just as asymptomatic as it has been for over a decade. I was just anxious. And, I still am.
I'm honestly afraid of living a lot more than twenty more years. Things like my parents aging, politics, finding a career, where I want to live, and so much more, have been gnawing at me ever since my life expectancy has matched that of my peers. In the past, I never really worried about those future things, and accepted that I'd die a lot sooner than my peers. But, now that I'm going to be alive a lot longer that I previously thought, I might as well start thinking about the things I used to never give a damn about. However, I'm avoiding things such as politics as much as possible, until my anxiety gets under control. I don't need to figure out where I stand politically at the moment, or learn about just how screwed we really are.
Although, I did get my primary ballots in the mail a few weeks ago or so (because I'm a registered independent, I got two ballots in the mail but could only turn in one), which forced me to do some very basic research on the candidates listed. I wasn't impressed at all by the choices, and cringed as I slipped my ballot into the ballot box after filling in the bubble for who I thought was the shiniest turd. I'm not at all excited about dealing with things such as politics, but as an adult who's going to live a lot longer than twenty years, I might as well exercise my rights. The next right I plan on exercising is my second amendment right, as soon as I finally decide if I want a 20 gauge shotgun or a .22 bolt action rifle. Oh boy, that's going to be a very difficult decision to make. I love bolt-action rifles, but I could also use a bird-hunting shotgun that won't knock me to the ground and give me a bruised shoulder for a week (unlike my dad's antique 12-gauge).
Anyways...
I guess I'm kind of in the same state of mind a 50 or 60 year old would be in, if they were given a pill that gave them an extra hundred years to live so long as they took the pill everyday. That's basically what happened to me. I think everyone in that situation would have a major existential crisis, kind of like I'm having at the moment. Just think about it that way before you go on chastising me for being anything but a ball of excitement and joy. I feel like I just got hit by a truck, and am still in shock from it two months later. It's going to be a long time before I feel completely better again.
With that said, I can feel myself slipping back into the fog again. Things will get better soon. I’ve just gotta keep reminding myself that. Depression and anxiety suck, but at least I know what I’m going through. I have a lot of hope knowing that these problems won’t last forever, and I’ll soon feel better again. I’ve just gotta take it one day at a time, and before I know it, things will return to normal.