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Hallo, willkommen

This blog is a personal record of the life of a chronically ill (chronically awesome), disabled, dyslexic, doctoral student and entrepreneur.

I share the beautiful moments, and the hard ones. It's unfiltered, and extremely uncensored.

Enjoy!

This Is Not That Day

This Is Not That Day

A few weeks ago, after fighting with my insurance and the clinic's scheduling center for almost a year, I finally got an appointment with a new PCP (primary care physician). I hadn't seen a proper doctor in almost 6 years. I couldn't afford to most of the time, and I was doing okay just managing my healthcare on my own. I joke that I couldn't afford to go see a doctor, so I just went to med school instead. Not totally untrue, but I digress. I saw the new doctor, who was amazing. She ran comprehensive blood tests and talked with me for a long time and concluded, not at all to my surprise, that there was nothing she could do to help me. I had already tried all the standard medications, treatments, and therapies for my various conditions, and they didn't work for me. I have also already seen a wide range of specialists in the area, and elsewhere, and she stated that it was extremely unlikely that anyone would be able to provide me with any new answers or options going through standard routes. So, she decided, the only real option was to refer me to Yale. It's an Ivy League teaching hospital, so it's got a lot of creative and utterly brilliant doctors working there, and they're on the cutting edge of what's out there as far as medications, treatment, clinical trials, etc. Also, they have some of the leading experts in the world there, so it is pretty much my last hope. A good hope, but the last one none the less. 

A week or so later I got a letter in the mail - my official referral to Yale Rheumatology (though I was well aware that a referral to neurology would probably be coming next to deal with my other, neurological disorders)! I wasn't expecting a cure or to be "fixed," but the idea that these brilliant experts might have some answers, some insight, some options for relief was overwhelmingly uplifting. Living with daily, excruciating pain (plus all the other symptoms that I won't get into here), the only thing that keeps you (or me, at least) from giving up is that glimmer of hope that somewhere out there there's a doctor, researcher, scientist, expert of some variety who will have some semblance of an answer for you. The knowledge that there's even an off-chance that you might not just suffer forever until you die. That hope is a far-away light on the horizon, but as long as there's a light, there's something to keep moving towards. And now, after over a decade of squinting to see if that light was in fact still there, it was rushing towards me! Sweet mercy, hope in a time of darkness!

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A few days later, I got another piece of mail, this time from Yale School of Medicine's Rheumatology Department. I ripped that letter open so fast! "Dear Ms. Kaeser," it began. I almost forgot to breathe I was so excited! The letter went on to say how they received my referral from my doctor, and how they specialize in working with people with medical conditions like mine. I was almost shaking with joy. This appointment was likely going to cost me hundreds to thousands of dollars out of my own pocket, and I didn't even care. You can't put a price on hope! I read on. Suddenly, my heart dropped. Like the whole fucking world fell out from beneath me, and I was simultaneously freezing and suffocating in the vacuum of space. They said, and I'm paraphrasing of course, that a panel of their doctors - experts, specialists - had reviewed my chart and concluded that there was absolutely nothing they could even potentially do for me, so they were denying my appointment and giving it to someone they were more likely to be able to help. They hope I understand. Have a nice day.

Over the last 10 and a half years, I have done a pretty good job of staying positive through it all. Oh sure, I have my depressive days, and my bad days, my flare-ups and my days I'm too tired to do the things. But on the whole, I have kept a good sense of humour, not given up, and kept pushing forward. Pursuing my education, trying new things, traveling, continuing to do everything in my power to care for my health and still live life fully. Because a silly disability isn't going to stop someone as awesome as me, right? In this moment, holding a single piece of white printer paper, not even signed by a real live person, all that vaporized. Every last glimmer of hope slipped away into the darkness. That light on the horizon that has always been there for me, faint as it may be, extinguished.

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There aren't words to describe the feeling of having held on for so long, fought so hard (all alone most of the time), and been so close to possible salvation, only to have it all ripped away and be told that you're hopeless. Doomed to suffer in ever-increasing measures forever. I spent a long while that night sitting in my shower crying my eyes out and drinking bourbon. A lot of bourbon. I sat there until the water ran cold. How can I possibly do this for another 50-some-odd years with no hope of relief?  Or even stability? I can't. I can't do this. Why should I?

I laid in bed under my electric blanket, shivering and in pain, staring blankly at the wall. Empty. Devastated. I managed about 4 hours of sleep, interrupted by nightmares and the haunting realization that this was likely literally as good as it will get. I will continue to be in ever-worsening pain, continue to be too exhausted to function, continue to slowly lose my mind. What is life without hope? What's the point? Are we meant to suffer for suffering's sake?

I have dealt with chronic, degenerative diagnoses. With the end of a marriage. The death of my best friend. And this news was far and away the hardest for me to process. I am still struggling to come to terms with it all. As it stands now, it's very much not okay. I'm very much not okay. But I can see that, with some time, things may be okay again. I will perhaps find a way to go on. I may have to create my own hope, become my own expert, cultivate my own options, but that's okay. It will all be okay someday. But today it is not. And I realized, thanks to bearing my soul to a very wise friend, that it's okay if it's not okay right now. I need the space to be not okay. I need to allow myself to be angry, FURIOUS! To burn it all to the fucking ground (metaphorically) and dance in the flames, then rise from the ashes like a motherfucking Pheonix in a knee brace and KTape! 

But that is not this day. This is not a rise above it and move on day. This is a weep for what is lost day. A rage at the sky day. A sad music and whiskey day. An allow myself to grieve deeply day. And maybe tomorrow will be, too. And perhaps the day after that. I will feel this pain fully until there is no more hopelessness, emptiness, and devastation left to feel. 

For one reason or another, I have always had to - or felt like I had to - fight hard, move quickly, and push forward steadily. Stagnancy is the ultimate transgression. That way lies madness. Don't dwell on the past, look to the future. And it is a philosophy that has helped me get where I am today. But there is also something to be said for giving yourself the space to feel something fully. Really feel it, let it burn through you, learn what it has to teach you, then let it go. I am struggling with that. Real bad. I'm also not good at letting other people support me, care for me. I push people away, keep them at arm's length, so I don't bother them. But it's also that... how do I say this... sometimes when you share things as uncomfortable, devastating, as this with people, even if they are there for you, they never look at you the same again. I've seen it many times. They care, they ask, so you share your chronic struggle, and then from that day on there's that look of pity in their eye. They never see you the same way ever again. And that is heartbreaking.

(Also, I'm so tired of well-meaning people suggesting remedies or diagnoses to me. For fucks sake, I appreciate you, but please stop. Yes, I've tried essential oils and homeopathy and antibiotics and braces and diet changes and antidepressants and pot and meditation and antioxidant-rich juices and your brand of yoga or massage therapy or exercise or physical therapy. I don't have a brain parasite or a virus or a pulled muscle or something caused by vaccinations. I actually already have a diagnosis. Several of them. Based on science and lab work, not armchair speculation. Please, I'm so tired. Please just don't.)

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So I push through, mostly alone. And it's not the worst. I have books, and bourbon, and they never judge me or break my heart or demand anything of me. And someday when things are okay again I will return to the land of the living, the land of people and socialization and small talk and smiling and laughing at bad jokes. But this is not that day. This is the day I just try to not give up.


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