Waking up

So I haven’t really been around for the last year. On this blog, I mean. But also kind of in the rest of my life? I guess I just haven’t really felt like myself? I couldn’t make heads or tails of anything going on so how was I even going to write about it?

I think maybe I’ll stop ending every thought as a question now?

Okay. So I haven’t really been around for the last year. Because it’s been a mess of a year. The last twelve months have been challenging, to say the least. Life has thrown a lot of punches my way, and after a few punches I just didn’t have it in me to stand my ground anymore and so I let myself get beat up. I’ve been a bruised version of myself. Defeated, I guess.

Medically speaking, it started with a doctor poorly interpreting some test results and completely misleading me, and then it kind of spiraled from there. I was hot potatoed around between doctors, some of who didn’t exactly have great bedside manners, and so even though it wasn’t my idea or decision to be referred to them, I ended up feeling a lot of guilt about wasting their time and resources. Also I didn’t really have a diagnosis anymore. And when no one really knows what’s wrong with you or how to help you, not only do your hopes get crushed each time, but you start to doubt yourself and your experiences. You wonder if maybe everything is your fault. Maybe you’re the one to blame. I did finally end up in the office of the right doctor, except neither of us were our best selves that day and so it was honestly a bit of a traumatic appointment. And while she did have ideas about treatment, miscommunications led to major delays so nothing actually came from that appointment for another seven or eight months.

Medically, it’s been a mess. And that’s not even the half of it.

It’s also been a tough year for me in my personal life. Nothing big or dramatic. Mostly just the normal angst that comes from watching everyone around you moving on with their lives while you’re still sick. Still stuck. And there have just been a lot of big changes for a lot of people close to me, and those changes have left holes in my life. It’s the natural order of things, and I don’t want it any other way for them, it’s just really hard being the one left behind.

Oh. And then. In the middle of all of that other medical mess I ended up essentially on bed rest for about four months due to some pretty life interrupting pain. After a number of tests and invasive procedures I actually ended up in the hospital for about a week. We weren’t able to totally resolve things, but we were able to finally start that majorly delayed treatment. Except then that was its own disaster because of some intense side effects that could have been prevented had there not been more miscommunications and a long weekend.

Just another big mess. Another round of punches thrown my way. Another set of bruises. Another serving of defeat.

But then. Finally. Various new medications and treatments we’ve been trying have started doing what they are supposed to do and I’m starting to feel like myself again. My sick self, but still. Ever so slowly, I’m starting to get my life back. My sick life, but my life nonetheless.

It has been like waking up.

Waking up from a horrible nightmare. A horrible nightmare that I thought I was going to have to become resigned to indefinitely. One of those nightmares where you know you’re dreaming and you’re struggling to wake yourself up but your eyes just won’t open.

It has been like waking up from one of those nightmares.

Waking up is not as simple and straightforward as it sounds, however. Being awake is its own struggle. Because some days, even though I’ve woken up from the nightmare, I’m still living in a bad dream. A lot of days, actually. Some days are even a terrible dream.

But other days it’s a boring dream, and I mean that in a good way. And then some days it’s even a good dream. Or some parts of some days, anyway. And those days, those parts of days, are like a breath of the freshest of fresh air.

Those days are also the trippiest because as soon as I feel not terrible for even part of a day my head does this thing where it jumps ahead about one thousand steps and starts making big plans. For example, I start thinking about how I should probably be looking for a job. When the reality of severe illness inevitably catches up with me one hour…two hour…six hours later, it’s a mix of “wow I’m so silly what was I thinking” and “this isn’t fair.”

This “jumping ahead one thousand steps as soon as I feel okay for even just part of a day” thing is not new. It’s something that I’ve done every once in a while as long as I’ve been sick. It just happens to be happening a lot more often right now because after waking up from that drawn out nightmare my brain and I are kind of fumbling around trying to find our footing in New Normal.

The thing is, though, as disappointing as it is when I come back down to reality from that “wow I feel okay at this exact moment so I think I’m just all better now and let’s start making big plans” place, it’s been so long since I even went to that unrealistic place that just going there feels like a win.

And so I laugh at myself. Because what was I thinking? And I furrow my brow. Because it’s not fair. And I smile, because oh well. And then I continue finding my footing in New Normal because I’m going to stand my ground when the next punch comes along.

So that’s where I’ve been for the last year. The last messy year.

And here’s where I am now. Awake.

I feel sick every day. I’m in constant pain. Nothing about any of this is easy or straightforward.


I’m awake!


Thank you, nurses (Nurses Week)

You stopped me in the hospital hallway to see how I was doing. I didn’t remember you from a sedated procedure several days earlier, but I know that procedure couldn’t have happened without you. You were glad to see me up and walking and you wished me well in just the most genuine way. And even though I didn’t remember you then, I still remember you now. Thank you, Carmen.

You were my nurse in post-op. You kept showing up at my side reminding me to breathe. You were soothing and reassuring through severe pain, and you didn’t let them move me until I said I was okay to be moved. Thank you, Mary.

You were my nurse when I returned to the floor after surgery. You were very pregnant, as in when I was re-admitted two weeks later you were home with your new baby. You must have been exhausted, but you stayed past your shift to help me anyway. Thank you, Nicole.

You placed both my PICC lines. If you were at all frustrated when placement took longer than expected, you didn’t show it. Later, you were already out of scrubs and you should have been on your way home when you showed up to adjust my line so that the heart palpitations would stop. Thank you, Marie.

You knew that 23-year-old me was out of place in a ward mostly full of older adults with dementia, and you did your best to make me feel less alone. You were pregnant and I made a hat for your baby-to-be, and then a year and a half later, when I wasn’t even your patient, you made the time to talk with me and show me pictures of your baby boy. Thank you, Nicole.

You saved me from the hallway. You saw what no one else saw, that even though I was young and mobile, I was actually really sick. And later, after I spent days trying to get someone to solve a problem with my line, you took care of the problem within an hour of being on shift. I still think you have magic powers. Thank you, Rose.

You exuded competence and skill and I remember being shocked to learn you were less than a year out of nursing school. It was clear that you were deeply invested in your patients. You were on shift over Thanksgiving weekend and you gave me reason to be thankful. Thank you, Mallory.

You always spent extra time chatting with me. You told me stories that made me laugh, even on otherwise bad days. You most made me feel like just a person, not a patient trapped in the hospital. Thank you, Kristine.

You were quiet but so kind. Your presence always instantly put me at ease. After a stressful situation in the middle of the night with another patient in the room, you knew that I was shaken up and you put your own stress aside to talk me through it. Thank you, Cristina.

You were there for my first tunneled line placement. I wasn’t given sedation and I had no idea what to expect, but you asked me if I was okay every few minutes. And every time you saw my eyes scrunch up in pain you gently held my hand. I never got your name, but thank you all the same.

You were with me for 12 pretty scary hours of my life. I was alone in the ER and sicker than I realized, but you watched me like a hawk. You acted quickly when needed, yet were calm and cool the entire time. You were always one step ahead and I knew without a doubt that I was safe on your watch. Thank you, Ashley.

You did my TPN training. You taught me everything I needed to know to manage my own care and you were the reason I was able to go home. You were encouraging and accommodating and you will always have a special spot in my heart. I hope you’re enjoying retirement. Thank you, Sheila.

You’re my TPN nurse now. You care about fitting my medical routines into my life, rather than revolving my life around my medical routines. You’re the first health care professional who I feel truly understands and validates the challenges of life on TPN. Thank you, Jennifer.

You’re still a student. You’re smart and caring and sincere. You’ve spent hours listening to me talk about my experiences and you don’t even get course credit for it. You’re in this for the right reasons and your future patients are lucky. Thank you, Angela.

I’ve spent months of my life watching nurses at work. I’ve watched you take abuse from patients who don’t acknowledge your skills and training. I’ve watched you care for people who are careless towards you. I’ve watched you watch patients ignore everything you’ve said and then quietly deal with the fallout. I’ve watched you comfort people as you tell them that their loved one has died. I’ve watched you care for patients in ways that go beyond your job description. I’ve watched you struggle due to staffing shortages and budget cuts. I’ve watched you do all of this, while also juggling a seemingly impossible number of other responsibilities, with patience and grace. And dedication. And all too often without recognition.

I could have mentioned many more of you by name, but there are also a lot of you whose names I can’t remember. Just as all of the medical stuff has blurred together over the years, so too have your names and faces. Honestly, though, just the fact that you are able to do everything you do without me remembering you for the wrong reason is a feat of heroism. And name or no name, I know that you were there, and I know that you gave of yourself to help me and others like me during our most vulnerable moments, and that’s amazing.

And I am grateful.

Thank you, nurses.



Winters and springs

(Hi friends. How are you? It’s been a while. I’m sorry to those of you who I worried with my long absence, although I appreciate that you were worried because I know that means you care. But please don’t worry! I’m okay, I’m just struggling with my health right now and life is a bit blurry and that makes the whole writing thing rather slow and difficult. Plus I’m out of practice. But I miss it! So hopefully I’ll have another post sooner than four months.)

Spring is here. And it finally actually looks and feels like spring.

Winter seemed to go on forever, eh? Even when the calendar said it was spring, the weather said otherwise.

And while I am speaking meteorologically, I’m also speaking personally. It rained on end outside, but it’s also been kind of raining on end in my life. Nothing major, just the daily grind of life, of living in a broken body, of being sick every day and everything that comes with that. It takes a toll. I know it’s been months since I’ve posted anything here, but with all the rain all of my energy has been focused on not letting myself get washed away.


Why yes, yes I am related to Grizzly Adams. Have I never mentioned that?

In some ways, the more you deal with the tougher you become, but in other ways, with enough rain, well it all just turns into mud. And there’s been a lot of mud lately. Not quite as much mud as my brother recently hiked through on the Dusky Track in New Zealand, but a lot of mud nonetheless.

As I mentioned, though, it does seem that actual spring is finally here. Outside, at least. Personally, I’m still stuck in winter, but when I look outside it’s definitely spring and that gives me hope. Because despite the unusually long, cold winter, and despite the well above average April rainfall, spring still showed up. Just like it always does. Just like it always will.

No matter what comes before it, eventually it always turns to spring. The tulips always bloom. The birds always start building their nests. All of these things happen every year. No matter how long or cold or dark or rainy or icy or snowy or gloomy winter is, winter always ends.

Spring always shows up. It’s dependable like that. And that’s encouraging.

But in other ways, it’s actually kind of discouraging, because spring is actually a lot work.

Think about it.

Those tulips don’t just appear by magic. They start out beneath the soil where it’s dark and lonely and they have to grow roots anyway. And then they have to find their way out of the soil, but sometimes squirrels dig them up before they even have a chance. And then they get to grow and bloom and be spectacular, except sometimes even if they’re doing a really great job growing and blooming the deer come along and eat them and there’s nothing they can do about it. It’s a lot of work being a tulip.

Same with being a bird. Some birds use the same nests each year, but a lot of them don’t. Come spring they start from scratch on a new nest. And birds usually only use a nest once so if they raise multiple broods each year, then that’s multiple nests every year. From scratch. It’s a lot of work being a bird, too.

And a human. It’s also a lot of work being a human.

Because we have seasons, too. They’re not as well-defined and as the ones that result from the Earth’s changing position relative to the sun, but we have seasons. Those gloomy and doomy and dreary and weary times? Those are winters. Sometimes our winters last for three months and sometimes they last for three years, but eventually things change for the better. Those better times are the springs. And just like the meteorological seasons, winter always ends and spring always shows up.

So sure, that’s encouraging.

Until you think about how much work spring is. And until you realize that eventually it’s going to be winter again and that winter is going to ruin everything. Again. So then when spring comes back it’s going to be a lot of work all over again. Finding your way out of the soil. A new nest from scratch. Over and over and over again.

Winter is harsh and spring is hard work.

Kind of discouraging.

But then I spent some time outside and noticed that winter doesn’t actually ruin everything.

img_0618Look at this Angel’s Trumpet in my backyard. Look at that new shoot. It’s growing right up from the middle of last year’s trunk. It’s not starting from the very beginning, from the soil. Winter didn’t ruin it. This tree weathered the long, cold winter, and that counts for something. All of its hard work from last year counts for something.

The new shoot is fragile, but its foundation is sturdy. Because it weathered the winter.

I think humans are the same. Fragile and sturdy. New and old. Finding our way and solidly rooted. All at the same time. Because we’ve weathered a lot of winters and our winters count for something.

Sometimes winter makes us tougher, and sometimes it just buries us in mud. Sometimes it does both. But that’s not what matters.

What matters is that we weather it at all.