Category Archives: chronic illness

Let's Dance

I’ve been pretty open about my physical and mental illnesses since I started this blog. I haven’t posted anything in a long time, for a lot of reasons. But I finally feel like I can look back at everything that’s happened, the many mistakes I’ve made, and all the heartache, confusion and fear and anger and pain…maybe because I survived it. I just know I have a strange feeling that I think might be hope.

The last year and a half has been one devastation after another. I’ve cried, I’ve screamed, I’ve wanted to die, I’ve been so afraid of what is happening to me physically that I’ve begged people to help me die if I become unable to do it myself.

Maybe you know and maybe you don’t, but I’m disabled. Mostly because of chronic migraines, depression, and PTSD, but I have so many other diagnoses that I’m not even going to attempt to list them all.

I spent a lot of my life in debilitating pain, both physical and mental. The only post I ever wrote that went viral was about being a mom with disabilities and feeling like I was failing, even as I loved my children so damn much and tried so hard. That was before what I’m about to tell you.

Probably 3 or 4 years ago, strange things started happening. I couldn’t walk straight. I started losing words, so I’d have to say “those cutter things” instead of “scissors.” I’d get lost in my tiny hometown. I forgot how stoplights worked. My body would feel so exhausted sometimes that it was hard to even lay down; literally doing nothing was too much work for it.

Of course, I had test after test, and MRIs, and saw a million doctors and no one knew what was wrong. My family doctor and I both thought multiple sclerosis at first. I felt like I was losing my mind–all the medical shit I already had, and now something else invisible?! It was scary, it was depressing, and I did not handle it well.

August 31st, 2018, my husband and I separated. Shortly after that, my youngest child, my 10-year-old daughter, went to live with him. I felt like I absolutely could not survive it. Even though I was getting sicker and sicker, losing my vision, had to stop driving, all these things that made it impossible for me to care for her alone, I just could not bear this pain. I didn’t lose her–she comes home every other weekend and school breaks–I just got the shit deal that almost every divorced dad in the world gets.

I’m not going to discuss my boys; they are 17 and 21 and I don’t think they’d appreciate being blogged about right now. (Or ever, lol.) But I know that none of this was easy for them, and the state I was in, both mentally and physically, only made it harder. That is another pain that I will always carry.

From the time my husband and I separated until just a few weeks ago, my health deteriorated so fast it was unbelievable. I was walking one day and the next I was literally crawling. My limbs not only stopped working, they started hurting in an excruciating way they never had before. I had to sit down to do anything at all, and even then my arms became too heavy to lift within minutes.

There were days that I didn’t eat because I couldn’t get up, and days I only had bananas because it was so hard to chew and swallow. Then my vision, which had been going in and out, started getting really bad–because I couldn’t hold my own eyelids open. Speaking wore me out. Sometimes I wasn’t able to hold my head up.

Taking a shower standing up was impossible, as was walking more than 10 feet. I couldn’t answer the door, as if I would ever do such a ridiculous thing anyway.

One neurologist suggested myasthenia gravis or some kind of muscular dystrophy. I gained 30 pounds. I was still having migraines and all my other issues, but now I also lived alone and was barely mobile even with a cane. The pain was so bad that I sometimes cried before I even got up because I dreaded it so much.

To say that I was depressed is a huge understatement. I was nearly 40. It seemed inevitable that at the very least I would soon be in a wheelchair. I saw my kids regularly, but I was always sick. I was never able to do anything for them or with them, and the more I tried to force my body to cooperate, the worse it felt.

Since I often couldn’t operate my eyelids, I had a lot of time to think. And I kept thinking that if I could go back to when I “just” had 5 million ridiculous things wrong with me, instead of being nearly paralyzed, I would do so much differently.

This was hell. I’d lost my husband and best friend of 16 years, my children, my ability to think clearly, speak, walk, brush my hair…and it just kept getting worse. I was so embarrassed, I avoided everyone I knew. I didn’t want my friends to see me like this.

Then, a few weeks ago, I had 4 really bad migraines in one week. When I recovered, I realized that I was walking better. I didn’t want to get too excited. But it became clear that whatever it is that I have has gone into some sort of remission. I can drive. I can see. I can walk.

I don’t know how long this will last. But now it seems like the things I thought were disabling years ago, in comparison, were kind of just a huge pain in my ass. I’m not saying that living with treatment-resistant depression and chronic pain and a fucked up brain and a migraine nearly once a week is awesome or anything, or that any of that has gone away, or even that I’ll be able to walk tomorrow. I’m just saying that, right now, while I can, for however long it lasts, I’m going to take advantage of it. I’m going to do the things I can do in this moment, and let the future worry about itself.

I have felt more joy in the last few days than I remember ever, ever, in my entire 40 years. I’m back in counseling. I’m going to the gym. I’m eating better. I’m laughing more. I’m singing LOUD, and I am a terrible singer. *shrugs* Sounding stupid just doesn’t bother me anymore. (I mean, obviously it bothers anyone who hears me. Super not sorry at all about that.)

I’m dancing. (Or at least moving my body in as close an approximation of dancing as I’ll ever get.) And I’m not going to stop until these legs decide they need a break again. Now that I know that it’s at least possible that no matter how dysfunctional my body acts, it can cut me some damn slack every once in a while, I’m not going to waste anymore time.

Things are not perfect. But, somehow, surviving this shitstorm has made me appreciate even the not-terrible. It’s crazy to me that I had to be so weak and feel so broken to finally know my own strength.

I don’t know what will happen next or when or what it will take to get through the next half of my life and keep this light inside me. But I’m also not dwelling on it.

I’m busy dancing.


“Stay with me, my blood”

Have you ever felt like holding yourself together is all you’re capable of? I’ve been holding myself tightly, arms crossed over my always-sick stomach. What if I let go and I just…crumble? Fall to my knees, sob, and just howl my anguish. I’m afraid that if I let go of this fucking pain, it will destroy me. I won’t get back up. So I don’t let go. I try not to think. I push my thoughts aside however I can. Of course I’ve cried, probably a million times. But something about this pain, these tears, feels different. This pain tastes like eating hot coals, one after the other, until I burn up from the inside out.

You know that game we surely all played as kids, where we pretended the floor was lava? That’s what my mind is like these days. I’m balanced on the tiniest of throw-pillow islands with boiling, steaming red grief surrounding me. I’m burned no matter which way I turn, and so I stay on this pillow, stuck, raw and blistered.

I keep picturing myself like this:

I sit in a lawn chair in the middle of my house while strangers wander around talking quietly and judging my things. Someone asks, “How much for this chair that caught your daughter when she fell asleep standing up after claiming she wasn’t tired?” And I say, “That chair is not for sale STOP TOUCHING MY MEMORIES I’ll take $50 for the pair.” And so it goes until my home this house is empty except for me and the past.

The guilt is eating me alive. At the same time, I’m screaming in my head that this isn’t my fault. The irony: My mental and physical illnesses are destroying my life and there’s nothing I can do about it because I’m mentally and physically ill.


Feckless Joy

I get up and, immediately dizzy, wait, holding on until I feel steady. I look down as I walk and think I look strong. Maybe it’s the Nike Swoosh across my toes. Maybe Pop’s old blue PJs, rolled up above my knees, or the racerback tank with the hollow-eyed skull on the front. For this minute, I feel not-broken. (Maybe.)

I think, “maybe I won’t cry today.”

Quieter, I think, “this is fine.”

“I can go on, like this.”

No more tests, no more doctors—wait—I’ve already taken my medicine this morning.

(I need water, I’ll get dehydrated, always forget, shit.)

Okay, so no more new doctors. No more tests. I’ll take what I’m taking, this is fine.

This, I can do.

Maybe I won’t cry today?

I fill up a big glass of ice-cold water and the thought, “What is Joy?” floats into my head, an abrupt intrusion, and unlike the butterflies that have been landing on me all morning, it doesn’t fly away.

I drink deep and get my notebook and pen, no idea what will come out other than “What is Joy?” and maybe (probably) not even that.

As I walk toward the door, my head feels heavy, like it’s a bowling ball I won’t be able to carry much longer.

I sit and, turning to a new page, glimpse yesterday’s list of things not done, remember today’s things that won’t be done, all the many things always coming undone…

I shake off, push down, smother out the rush of worry these thoughts bring.

No. Not now. (They’ll wait.) I inhale cancer-causing, anxiety-eating smoke and start writing, not about Joy, at least not as could be recognized.

Soon, though the notebook is resting on my thighs, the arm holding it in place aches and starts to tremble. My handwriting becomes illegible as the fingers of my right hand protest at holding a pen for—what? Three minutes?

Another butterfly lands and quickly leaves.

What is Joy.

I sit back, exhausted, feet burning, back and neck and tailbone hurting so much now, too much, and fuck, what was I thinking, writing, both arms from elbow joints to finger tips on fire, screaming in pain and my bowling-ball head, not one to be ignored, tentatively joining in, tapping out a subtle beat.

Fuck.

Loud, I-am-the-boss, I think, “No. Not. Today.”

Quiet, I think, “please.”

What is Joy?

A momentary illusion of strength.

A fragile bubble burst too soon.

A daily dream that is my life-mare.

I don’t know this “Joy” except as it flits in, then out.

Another butterfly, tasting the blue truth of woven cotton, fluttering away.

I shake my bowling-ball head at feckless Joy, scared off by salty tears.

Someone says, “It’s all in how you look at it!”

I look.

“Looks pretty fucking shitty,” I think, sour.

Someone says, “Stay positive! Other people have it so much worse, you know.”

Someone says, “You know she’s faking it. Just wants attention.”

Someone says, “It’s not like she’ll show up. Why bother asking?”

I say, “These butterflies keep thinking I’m a flower.”


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