Bravery Needed: Apply Within

I am not a brave individual. At twenty-six years old, I refer to the woods outside our apartment by the dumpsters as “The Forest of Doom” and outright refuse to take the trash out after dark for fear of being attacked by Slenderman or some other completely fictional monster lurking in the shadows. I believe in and am terrified of ghosts, Nikki and Pam both know to leave a light on for me if I’m the last one leaving the living area at night because I’m afraid of the dark and feel like I’m being chased if it’s too dark. Before I started living with Nikki, I had to sleep with my bedroom light on, which drove my parents absolutely crazy (which I now understand as a utility bill paying adult). I am easily startled by loud noises and once nearly peed myself because Pam turned on the vacuum cleaner directly in front of me as I watched her do so. I still can’t watch scary movies and, while I’ve found a weird fascination with ghost stories or creepy things, I can’t be alone while enjoying them and I have to watch or listen to Disney things afterwards if I want to sleep.

Nothing, however, has been more terrifying than knowing that my time is running out.

Most people, when they learn about my diagnosis and “timeframe”, quickly remind me that we’re all dying and nobody’s time is guaranteed to them. While I understand the sentiment, unless you’ve been told when you’re supposed to die, you don’t really understand why it’s so scary.

Fear for me has always caused me to curl up, pull in. Somehow, this has not been the result of this particular terror. I have been acting, seemingly without permission from half of my mind, and not just taking steps towards things I always said “I’d get around to eventually”.

I am leaping. I am flying. I am hurdling at top speed, throwing myself at the things I wanted out of my life but always had an excuse to put off.

I am breathless with fear.

I am breathing anyways.

I am terrified of failing, of slipping and falling into past mistakes and bad habits.

I am moving forward anyways.

I am mortified to share this fear with the world, to be seen as the coward I see myself as.

I am sharing anyways.

“Courage need not be remembered because it is never forgotten.”

Bravery position has been filled.

The Social Posts Return!

Name: Jesse

Relationship: Basically my sister.

I think I figured out why you’re in pain all the time. It’s because you’re a giant trapped in a tiny body and that’s why you hurt all the time.”

What should readers know about you?” I’m pretty fucking awesome. I’m also a spoonie. (Pam: and just like me) And just like Pam…but with less boobs.”

What does your role in my support system look like? “I think I’m an emotional sounding board and…I know you for me that you’re another person that I can vent to that I don’t get sad dead puppy eyes over it. We can list all the little accomplishments and be excited about it.”

What should readers know about me? “What should readers know about you? *sigh* (gets distracted by cat, “you’re so purry…” Do you remember when you tried to make “Kitty” a thing? You’re really cool, except for when you try to give yourself nicknames, which is not cool. You’re really creative and even though you try to pretend you’re all thorny, you’re really not.”

 

The Return of the Lemon Writer

Hi everybody. I missed you very much. Things have finally settled enough (sort of) for me to be able to pick blogging back up on a much more regular basis! I can’t make promises for daily posts, since I’m going to be significantly more busy than I was when I created the blog a few months ago.

As of confirmation yesterday, I will in fact be a full time student with Cornerstone University’s Accelerated Psychology degree program beginning June 5th! My enrollment counselor texted to give me the happy news and told me that my first class will be a Personal Wellness course, which I’m thankful for. It will be nice to get a feel for the pacing and demands of the program with a class that will also ensure I’m giving myself my best chance. You all know how I preach and prattle about giving you your best chance! There are still a few financial aid hoops to jump through, but with any luck, I’ll be able to clear them quickly enough and stay enrolled. Keep your fingers crossed on that one!

As of the beginning of this month, I am an official freelance writer! I have submitted several pieces to several different publications and contests, so keep checking into the blog for those updates. I’ll let you know when I know of each one’s success and, once published, I’ll be sure to share the links to said pieces. I’m excited to finally be able to call myself a true freelance writer.

I’d mentioned before that we were joining a Dungeons and Dragons group to see how we all liked it. We didn’t just like it, we loved it! Our second night of getting together for it is coming up very quickly and we’re all pretty stoked to continue our adventures and shenanigans.

And now, we come to Cleveland Clinic. I know I’ve been oddly quiet on the subject and that’s because, frankly, there isn’t a whole lot to share. I don’t have results or any new information of importance and, in light of everything going on right now in our government, I know that when I talk about my healthcare experience with Cleveland Clinic, it will be incredibly hard to avoid talking politics. When I started the blog, I told myself that I wanted to avoid politics. Unfortunately, to avoid politics that so directly impact myself and the people I am writing for here on Lemons and Spoons would suggest that I don’t care. In this instance, neutrality feels like apathy and I can’t, in good conscience as a writer and as a person, stay silent on such an issue. I hope that my political musings won’t discourage readers from connecting with the blog. This is still a blog for everyone, no matter what way you happen to vote. Illnesses don’t just target one political party or idealization, after all.

With that, the sun is shining, birds are singing, and I have work to get done! Peace and love to all of you.

My Mother

I’m back! I’ll tell you all about Cleveland Clinic, but first, something much more important.

Today is Mother’s Day, and that means I get a chance to tell you about the incredible woman that gave me life and improved the life she gave me with every breath she’s taken.

My mother is, by nature, a people person. She’s like me in that we are both introverts that are driven by a need and a passion for helping others to step forward when our minds tell us to shrink back. She was a counselor and adviser for a local community college and she still teaches, even though duty has called her to become more of a leader than she probably would have imagined she would become. Her heart constantly remains open, her patience weathered, but seemingly unending.

Her strength. My God, she is powerful. She isn’t a knock-down, drag out powerful. She is the eye of a hurricane, calm and constant, no matter how the storm around her rages. She has dared to seek happiness and she has managed to stand strong against grief and loss.

She views her body as something imperfect, something not beautiful. She struggles like I do to embrace her beauty. More than that, she is a beautiful soul that resides in a body that has tried to destroy her and she emerged victorious. She wears scars from her battle, but thinks nothing of them. She is a warrior, her body once the enemy, but never the victor. Her body, like her spirit, is humble, but mighty.

She is a sage to so many. A guide, a mentor, a dear friend. She is so many things.

But to me, she’s Mom. I’m just lucky enough to have that going for me.

I Have Succumbed to Madness

This week was the start of my being off my meds in preparation for the testing to come next week. This week also happened to hold our very first gathering for Dungeons and Dragons. 

Everyone had a spectacular time, but perhaps no one enjoyed it as much as I did. 

See, going off of 40mg daily of Paxil cold turkey has an interesting impact on people. For me, it means wildly moving between fantastically, over the moon happiness, crippling anxiety that leaves me breathless, intense and uncontainable fury, and crying for any, all, and no reason whatsoever. Combined with intense pain that cannot be addressed by anything strong enough to do any good?

I will consider myself incredibly lucky if I am not killed by Nikki or Pam before this is over.

In four days, we’ll also add sleep deprivation and unfettered nerve pain to the mix as I drop my remaining medications until after testing concludes on the 11th. 

So I will say again, if you hear very little from me over these next few days, I’m okay. I’m just losing my mind, that’s all.

The Slow Descent 

Cleveland Clinic Round Two is fast approaching and already, I’m having to slowly work off of my medications. This means my pain, my sleep, my appetite, my depression, my moods, everything will decline as I drop each medication. The night before requires fasting and no caffeine, which will have my autonomic symptoms flaring in no time. All this in the name of tests that I probably won’t even know the results of until I go back again in September.

I’m doing everything I can to counter the impact this is having and going to have on me emotionally by making plans, staying as positive as possible, and reaching out into my support network for those who are always willing to help me. 

In the meantime, self care is going to become a sole focus. Making sure I’m giving myself my best chance is key to making it through the next couple weeks with sanity, relationships, and body intact. Blogging may become a little irregular, as it has been for the past week. I hope, however, to use it as a means of keeping myself grounded.

Peace and love to you all. I’ll have good news to share with you very soon.

Kato

I apologize for not blogging the last couple of days. I needed to get myself mentally and physically prepared for a big opportunity I would be interviewing for. I can’t tell you about it yet, but I promise I will as soon as I can.

The moment arrives, the big interview begins as my cell phone rings. I answer politely, letting my comfortable spot on the couch coax my anxiety away from my voice.

Then Kato woke up.

He’s taken to sleeping on Pam’s bed, since she leaves her bedroom door open for the cats to have more space. We don’t have an issue with him doing this, obviously, but it comes with a particular issue. Every now and then, he’ll wake up not knowing if he is alone or not. He doesn’t like to be alone, so this search for companionship usually occurs with a meow or two.

Did I say meow? I meant banshee impersonation. Or demonic karaoke. Whatever it is, it is not a dainty sound, nor is it quiet or discreet.

I felt the color drain from my face as I flung my seated body sideways and into the hallway. He cuts off mid-scream and prances toward me as I carry on the interview, assuring the women on the other end of the phone line that the crash they just heard was nothing important and them calling earlier than expected truly was fine.

Then I watch him stray to the closet where we keep his food.

I knew what was coming next, but I was powerless to stop him as he got up, tapped the hanging toy from the doorknob as my wife helpfully trained him to do to ask for food, and unleashes another long, pitiful wail. This time, I hear a pregnant pause and feel the silent questions slinking through the phone line, but pretend I don’t notice and calmly answer their question.

This continues for another five minutes or so. Kato follows me around doing his best impression of a screaming human baby while I calmly get a sheet of paper and pen, write down a quick note pit stop in our snack cupboard, and walk out of my apartment.

Outside, I verbally affirm what’s being said to me as positively as I can while I beeline towards the landscaping professionals that have been sweeping, bull-dozing, yelling, leaf-blowing, mowing for at least an hour outside our building. I try to portray myself as non-threatening as possible as I hand them a note and a couple of cookies.

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Dear amazing landscapers,

My cat is conducting some kind of Occult Summoning of Demons Opera while I’m doing this phone interview. You get an Oreo each if you take a five minute break. ~I’m not crazy.”

Totally, not-at-all weird, right?

They gratefully laughed, gave me a thumbs up for good luck, and walked away from their machinery until I got off the phone, thanked them profusely, and went back inside, where Kato slept peacefully on the dining room chair closest to the door.

He’s lucky he’s cute.

Adulting

We joke a lot with each other that we aren’t ready to be adults. Despite that, we seem to do a pretty good job of it. 

Coming out of the bedroom today, Nikki and Pam were in deep conversation over budget things, figuring out the best way to time out what bills get paid when and by which person. I settled in across the table with my breakfast and typed out a letter that needed to be sent to my enrollment Counselor for school and booked the hotel for the upcoming Cleveland Clinic trip.

Then we all set off to various appointments and I, for the first time since second grade, made an eye appointment. I can tell my vision has been changing and I’ve been putting off an appointment for quite some time. 

Hopefully, the rest of the day will be more fun and less work, but these days come with a sense of pride. Knowing we can get up and tackle a day full of tasks helps us feel accomplished. It’s easy to forget that doing these kinds of things is a form of self care. Make and go to the appointments, take care of the administrative tasks for school or our finances. It feels like work, but it’s a very basic form of making sure we’re taking care of ourselves. When framed like that, it feels a little less daunting and a little more like support, giving ourselves our best chance.

“Have You Tried Yoga?” and Other (Not So)Helpful Suggestions

I went to the gym today! I lifted some weights, walked on the treadmill, and was starting to feel pretty kickass about the whole thing.

Until a fellow gym user approached.

“Your heart rate is pretty high for speed you’re going. You okay?” he asked, concern clear on his face. This irked me for a multitude of reasons and honestly, I could write for years about why mansplaining irritates the crap out of me, but that’s not what this post is about, so I’ve benched my inner feminist for the time being. Applaud, people, she doesn’t sit down easily.

I patiently explained my conditions and he listened with the fairly standard look of concern and shock. Then his expression shifted and his lips parted. He took a breath.

Oh no.

No, please. Not that. Anything but-

“You should really try yoga!”

I feebly thanked him for the tip and left the gym with the intent of coming home and following some of my favorite barre videos to complete my workout for the day.

His suggestion is one of the most common things people, usually able bodied people, say to me and other not so able bodied people like me. At face value, it’s a thoughtful suggestion that shows a desire to help, to offer an alternative way to get or stay healthy. The issue, however, is that, unless you are my doctor, I don’t really want your advice on how to manage my illnesses. Chances are, the other lemons and spoonies of the world are also tired of this suggestion.

ableist bingo
Notice the first box? Yeah, it’s not just me.

Now, I don’t want you to think that I don’t recognize and appreciate the intention behind some people’s suggestions. As I said before, they almost always mean well and just want to help you feel better. That’s the problem, though; there is no “feeling better”. There are good days and bad days, sure, but the root of the problem with suggestions and statements like these is the lack of understanding of what a chronic illness really is and what it’s like to live with.

One of these days, I’ll get around to writing the post I’ve been meaning to write about things you can say or do that are more helpful and supportive, but today for me needed to be about voicing some of the irritations. I know so many lemons and spoonies out there with horror stories of their own. If you’re ever looking for some fun times, look up Chronic Illness Cat memes. If you laugh at them, chances are you’re a spoonie or a lemon. If you don’t really get it or if you’ve said these things to someone, you should maybe talk to the lemons or spoonies in your life and work with them to come up with some better ways to talk about their health and wellness.

In the meantime, I’m off to give this yoga thing a shot. It comes highly recommended, or so I hear. 😉

Changes

This particular Sunday feels lathargic. I hit snooze on my alarm more than usual, I didn’t want to blog, I didn’t want to eat breakfast. Even sitting on the couch watching Pam play Zelda was broken up by spacing out, losing minutes to some void of attention. 

“Get your sunshine in today.” Ordered Pam and our good friend Liz. “Take selfie with you and Kato outside and send them to us.”

Kato hadn’t gotten his turn outside yet while River has been out twice, so this seemed like good motivation to head out. I grab our outside blanket, a pad of paper and pen, throw Kato on the harness and lead, and made my way out to the courtyard across the street. 

At our old place, Kato loved going outside. He would chase leaves and make friends with our neighbors, wasting hours in the sun. Today, though, he stayed glued to my side and cried until I relented and brought him back inside.

It’s one more thing that’s changed in our move from Okemos that leaves me feeling as if we’ve had something stolen from us. We don’t greet our neighbors like we used to. We don’t chat with fellow pet owners and we don’t know the names of our management. 

I hate it. 

We moved under terrible circumstances, having been the victims of escalating hate crime that made us feel as though we were fleeing our home. Our apartment in Okemos was bright and cheerful, with plenty of sunlight and fresh air coming through our windows. Our apartment faced east, so the morning sun always spilled into our living room for the cats to soak up. Our white walls were broken up with a cool blue and touches of peach from our couch pillows. We knew our neighbors, became particularly close with our upstairs neighbor, Lauren. 

I met our first neighbor last week, four months after moving to the new apartment. The floor plan of this apartment feels more spacious and the floors and appliances are all more upscale, but it’s dark and cold. We tried to bring warmth with a creamy blush and wine colored walls, but it only truly feels warm when the sun sets and we turn our lighting fixtures on. The ease of stepping outside and grilling on the patio has been taken away, replaced with walking through our dark, dull, basement hallways and up a flight of stairs to reach the outside that doesn’t ever seem to reach us. 

I keep waiting to fall in love with this new home. I’ve always struggled with change and know that change brought on so suddenly and by something so terrible was bound to leave me feeling a little unhappy. It’s only now, as the days begin to stretch longer and the breeze becomes warmer, that I’m beginning to fear that I’ll never have that fall in love moment. 

In the meantime, the sunshine is beckoning.