Waves

Today my pain got rather intense. I am having a lot of difficulty with my left arm due to arthritis, bad posture, age, bone spurs in my neck, tendinitis in my wrist, elbow stuff … basically all of the normal stuff for a person in their mid 40’s plus the inflammation of a chronic disease.

I pulled out my big ice pack that’s the size of a thin pillow, wrapped it around my arm, lay my head down on top, then wept. In that moment I knew I had finally cracked. I gave up. It was too much.

I have been trying an increased dose of gabapentin. 100mg in the morning & another mid day. It leaves me feeling immensely heavy. I already take 600mg every evening, & that was hard to adjust to in the beginning as well. Eventually the drowsiness & despondency became acceptable. Piling onto that during a time that is already sad seems like it could be a bad decision.

I know that I have more options available to me than being in pain or over-medicated. But for the life of me I do not know what those options are.

I have been spending my days in a garden house that my friend built me in my backyard. The walls are windows. It will serve as an official greenhouse after the pandemic, if I don’t decide to make this my full-time abode. It’s quite lovely. I have a garden that needs tending, but is beautiful to look at nonetheless. My tomato plants are over 6 ft tall. I have honeysuckle, jasmine, lavender, rhododendron, salvia & hydrangea. Kale and chard stick their leaves out proudly. The peppers are producing happily. The walls walls onions look promising. It is a good garden.

It is also profoundly lonely, which is somewhat ironic because I am absolutely surrounded by people. There is an apartment building whose second story’s view is my yard. We’ve put up a privacy panel, but still. They’re right there, & their parking lot shares a fence with my yard. The family on my west side has a gaggle of children, all of whom sound under ten. In particular there’s a girl who can’t be more than 5. She has perfected a high pitched scream that makes my skin crawl. I told myself last year that she would surely outgrow the need to spend her days screaming spontaneously. I apparently do not know much about child development.

The same family likes to crank a latin radio station. I enjoy it for the most part, but I would be a damn liar if I pretended it doesn’t get to me after a couple of hours. Don’t get me wrong; mixing traditional music with modern techno leads to some catchy tunes. As it turns out, the tuba lends itself nicely the the drop in dubstep. Accordion compliments the dancehall jams. One song even sampled a rooster’s crow. It was amusing, if nothing else.

To my east, a guy & his father. The son is roughly in my age group. He & my roommate have struck up a friendship. But both he & his father seem to be the type of cis men who do not address women in conversation voluntarily. My old habits creep in as I quietly wait on the sidelines of afternoon chats to have a turn to speak – which is inevitably to offer them vegetables. But I don’t mind. I prefer healthy boundaries, & I’m exceedingly reticent to give any of my neighbors license to engage with me. I don’t enjoy feeling obligated.

It usually makes me feel instantly violated, as well, when the father pops his head over the fence to chat with my roommate, or when he barks back at the dogs. My god, I hate that. I finally got him to stop by enlisting my roommate to talk to the son. I don’t normally care to go the roundabout way to communicate, but I know where I stand in the gender dynamic with them. I knew my roommates’ words would hold more weight. It worked.

I sit in the middle of all of this, with my oasis of a garden, quite lonesome in my fancy she-shack. Loneliness feels all the more profound & painful when you are not alone. Should anyone of them try to solicit conversation though, & my bubble of privacy completely bursts. This is agony for me. The same kid who locked me in the closet as a kid also violated my privacy in the bathroom constantly. His head would pop up in the window as I tried to go pee, & he would laugh his ass off. I think I eventually started blocking his view by pulling the shower curtain closed, but let me tell you – that kid was an utter asshole. I will never, ever forgive how his specter haunts me to this day. I loathe him with everything in me. No amount of therapy will remove that. Don’t think I haven’t tried. My bank account would be a different thing entirely if it did.

I am alone in a crowd, both yearning for company & ready to strike anyone who invades my space with the ferocity of the angriest of adders. To this, I also see no solution. I am having a covid safe friend over soon. I hope to god that it helps. I honestly don’t feel like this is safe for my mental health. To be clear, I am in therapy, I have a safety plan, I am doing all of the anti-suicide vigilant things. But it is a battle. An active, ugly, weepy, snot nosed battle.

When the pain is intense, I lose ground in that battle. But I ride the wave. I look at it as it’s own creature that needs to be birthed. If I need to rest my head on an ice pack and cry, I do that. They say the erase can be cathartic. I can only keep trying.

I feel so irrevocably stuck. But perhaps that’s good, as it seems to be the kick in the ass I needed to start writing again, eh?

Ah, life can be so cruel.

The Little Things

Truth be told, I’ve been trouble since I was born. I was born with jaundice, which is really no big deal, I guess, but I went on to have one medical emergency after another. But that’s a story for another time. Right now is the time for the tale of how the major medical issues that I’ve had to deal with as an adult started.

It began as a lot of major problems do – with my left ring finger. I was about 25, maybe younger. I weighed all of 120 lbs wet, was living in my first apartment with my plant Herbert, and was pursuing my long time dream of getting a degree in Theater Arts. I was full of the usual 20 something drama, to be sure, but I was also pretty stoked. I was going full throttle – 30 credits in a semester, back to back shows. I was writing plays, directing, acting, stage managing, and running lights. I was working with AWESOME people. Of course I didn’t appreciate it as much as I should have. 40 year old me would kick 20 something year old me’s ass and tell her to quit moping because that one guy didn’t like me as much as I wanted, and to appreciate her good looks, talent and general good health on their own merit. But that’s what being 20 something is like, and this what being 40 is like, and … there you go. I was a hot young thing. I could wear the micro-mini babydoll dresses that were the rage at the time. I could bend over and not be embarrassed when I got compliments. It was good times.

Then my left ring finger started to swell. At first it just hurt all of the time. Then I couldn’t bend it. But I didn’t think much of it. I was so busy, and even though it really hurt, I wasn’t going to complain about it. Look at all of the cool things I was doing! Do you really think I’m going to complain about a sore finger? Come on. I figured I’d just jammed it while moving around lighting equipment or something. Never mind that I wasn’t moving the lighting equipment much – it was heavy, and I am short. Surely, 20 something year old me thought to herself, it wasn’t something I needed to go to the doctor for.

It started to turn purple. It was so swollen, it felt like it was going to pop. You kind of can’t ignore or hide a giant purple finger that won’t bend. People look at you funny.

I finally went to my doctor, who I’d been seeing for half of my life. It feels strange to simply say that without qualifying which doctor. At that point in time I only had one. Now I have a small sports team. But he was a great guy. He was smart, we trusted each other, and he listened to me. We knew each other well enough that I could walk in and say “I have an upper respiratory infection, I need antibiotics.” He’d say, “OK, let me look. Yup, you’re right.”

He asked what brought me in this time, and I sheepishly offered my left hand. “I think I jammed it or something.”

“Or something”. Man, 20 year old me. I would kick your ass SO hard.

He ran blood tests. I can’t remember how it went from purple finger to blood tests – probably because it was purple – but the results came back and my white blood cell count was sky high. For those of you who don’t frequent your friendly doctor’s offices more than the grocery store, that means that your body is fighting something. But my doc was just a normal, Primary Care doc, he couldn’t diagnose it any further than that. At that point, I didn’t have a full understanding of what a “Primary” Care doc was. I quickly found out. He put me on prescription strength Alleve and referred me to a specialist – the local Rheumatologist. There was only one Rheumatologist in the entire county. His wait list was 3 months long.

Thus started the scariest summer of my life. Something was very, very wrong, but no one knew what it was. I spent the summer coping in the best ways I knew how. I tried to enjoy each day, facing the reality that it could possibly be my last. Ironically, a lot of it is a blur, but I remember certain aspects.

I was having trouble brushing my hair. My arms hurt. My hands hurt. Then I’d have a good couple of day and things would be fine. It would come back, and suddenly I couldn’t roll over in bed. I’d wake up groaning from the pain, laying on my futon in my awesome studio apartment of my very own, Herbert the plant standing guard in the corner.

Herbert was my first house plant. I still have him. We’ve been through a lot.

I moved in with friends to be closer to school, save money on rent. I went to acupuncture every week. I went on a macrobiotic diet and lost 20 pounds. I took herbal supplements. I had what is known to this day as the “suitcase of drugs” – which was actually my supplements, and not many powerful drugs at all. But it sounded good.

I started walking with a cane. Canes are real cool and all, but when you’re as young as I was and you are walking like you’re 112, it’s hard to pull it off as dapper or debonair. It just doesn’t play very well.  It’s really a damn shame, because that could have been fun.

I went to France that summer, with a bus load of senior citizens and my friend Becca. Kind of a weird thing to do when you have a mysterious medical condition, but when you think that it might be your last chance to see the world, it makes sense. We sang in churches all throughout France. We sang in Chartres Cathedral. We had a “Royale with Cheese” and got lost in the red light district of Paris. When the Louvre was on strike, Becca and I ventured off on our own to explore Montmartre. We saw where Picasso had lived, and Seraut. We slowly walked the streets that Antonin Artaud, Salvadore Dali, Andre Breton, Man Ray and Eugene Ionesco had walked. We were in Avignon when France won the World Cup. It was glorious.

I had my trusty cane with me, and walked with the mindset that if I acted like it wasn’t there, then everyone else would ignore it. It worked, most of the time.

Inevitably I’d get The Question. I hate The Question. The Question always comes from some know-it-all who thinks they’re being cute or funny. In some weird way, they think they’ve caught you in a “gotcha!” moment, and have absolutely no concept of empathy. They’ll bobble their head around, look me up and down, and ask, “Aren’t you too young for that?”

I think I may have tried to explain it off at first, or something. But it really never mattered. They didn’t really want to know that I had an undiagnosed, possibly life threatening, extremely painful thing going on with my body. I quickly learned to answer their question directly, and unapologetically.

“Yes.”

Yes, you motherfucker. Thank you for pointing out that life is unfair. Thank you for asking me to defend my physical condition. Thank you for reminding me of my lost youth. Thanks for implying that I should “know better” or be able to fix this some how, because I have just started out in life, and surely I can overcome anything. YES, I am too young. YES. Now what? Of course you “didn’t mean anything by it”. I’m sorry I “don’t really look sick”.  I am WAY too young to be walking with a cane. The fact that we agree on that doesn’t change a thing.

I may have some misplaced anger or resentment issues going on there. I don’t think many would blame me.

It was finally time for my Rheumatology appointment. Hopefully I would get answers. I was terrified. The day before the appointment, I called my friend Dave. I told him I was scared because I didn’t know if I was going to be told I was dying or if it would all be cured by a magic pill. He came over and we had a fake sword fight with cardboard tubes from used up wrapping paper. Dueling Dave with a tube of cardboard was the most cathartic fake sword fight I’ve ever had, and I’ve had a few.  Thank you, Dave.

All of my life, my mother had accompanied me to my medical appointments. I needed her as a child, of course, but as an adult I needed her as backup. Many times I was too ill to remember everything the doctor told me, but she would. And she was my mom, which seemed reason enough. But for this appointment, I needed to do it alone. I had no control over anything else in my life, but I would have control over this. I’d face whatever the doctors had to tell me on my own, and tell the world on my own terms, in my own words.

I’ve failed to mention that throughout this I had dandruff. The back of my scalp was super scaly. It had always been that way, and I didn’t think anything of it.

The rheumatologist was a cigar smoking man’s man. His office was full of dark wood, and I’m pretty sure there was a taxidermied animal head or fish mounted on the wall somewhere next to a picture of him fly fishing. He had no tact. I didn’t know or trust him, like I did my Primary Care doc. He was all business, no heart. I didn’t much care for him, but I respected that he was an expert, and I needed his expertise.

It was decided that I had arthritis. I was not going to die. I was, however, going to be put on drugs that might make me feel like I was going to. Low dose chemotherapy medication is a common treatment for severe arthritis. So are sulfa drugs, and he put me on that too. Huzzah, answers. Huzzah, treatment.

It wasn’t a quick fix, but it was something. It wasn’t as much of a relief as I’d expected. I was glad I wasn’t dying. All of the mental preparation I’d gone through to hear that was for naught, but it was a learning experience. I can’t say it hurt me. In many ways, I’m thankful. It helped me appreciate every day. It helped me slow down, and appreciate every little thing.

It was a life sentence. Hopefully a run on sentence, not a fragment. I’d have to figure out the punctuation to make it right. And that’s how my left ring finger changed my life forever.