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.
December 14th, 2019 at 9:41 pm
You know, every time I see that you’ve posted, I start smiling with anticipation. I love the way you write, your authenticity … It makes my heart sore that so often you are writing from a place of pain, but at the same time I feel privileged and grateful that you share your story. You write with such courage.
So … Not sure where to go with all that. I guess I just wanted to write a fan mail, say hi, send a cyber hug. I wish you weren’t a whole continent away.
December 17th, 2019 at 1:06 pm
I wrote the longest reply and then did something, Idk what, but it’s gone lol.
Your comments always make me feel so good. Especially after I’ve neglected this blog for so long, to see you here is wonderful. My daughter is writing too, and your comment inspired her to start sharing some of her poetry. So thank you for that too.
When I couldn’t get around much, I thought about all the things I wish I’d done more of, and traveling was pretty high up on the list. It would be so amazing to meet you!
Thank you, thank you, thank you, for the strength your comments give me, for being here from the start, through all my craziness, and even now when I figured no one would be!
December 17th, 2019 at 1:12 pm
Well, Steph, we crazies have to stick together! I know how you feel … Sometimes I abandon my blog for months, and it’s always such a relief to come back and find that people I care about, who enrich my life and strengthen me even if I’ve never met them … To find that they’re still here and glad to hear from me. So, yeah,, don’t give up. Your voice matters.
December 17th, 2019 at 1:37 pm
Crazy is so much better with friends! I’m trying not to overwhelm myself with things I know I should do now that I can. But I WILL eventually be blog-stalking you; I have a lot to catch up on!
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December 14th, 2019 at 9:52 pm
To be cliche…the dawn is brightest after the dark!!! 😜 I’m glad to see you writing again girl!! And all the other stuff too!!! Keep dancing!!
December 17th, 2019 at 1:11 pm
When I wasn’t able to get around well, I kept thinking of that saying, “Dance like no one is watching.” It was cliché, but I felt it so strongly, I wished I had danced more, instead of being embarrassed by my…let’s call it a “lack of grace” lol. I’ve always felt very tense and anxious at the thought of people watching me, even if I wasn’t doing anything! It’s liberating to be old, a little chubby, and extremely grateful for legs that hold me up! 🙂
December 14th, 2019 at 11:09 pm
Please look up Behcet’s syndrome. These symptoms are very common in it and it is well known for “hiding” when tests are performed. I’m pretty much an expert in it at this point so message me if you have questions.
December 17th, 2019 at 1:20 pm
Heyyy, Jodee! I did indeed look it up; it doesn’t “feel” as right as myasthenia gravis does, if that makes sense. But ALL these autoimmune-neurological-NONSENSE diseases share so many symptoms. Like, I have chronic fatigue syndrome, diagnosed years ago, and I just saw a video of a lady and apparently that’s what has her in a wheelchair. So…is it something I already had, gotten worse, or something new, or both, or, or…who knows.
You’ll probably get a kick out of this: I finally got in to the Kansas City Institute of Neurology and my appointment is in a month. Not a month ago, when I had VISIBLE symptoms, but now, when I look healthy as a damned horse!
December 15th, 2019 at 2:05 am
Dancing sounds great 🙂 Hope you stay this mobile and joyful, or better, for a long time 🙂 Good to hear from you again
December 17th, 2019 at 1:22 pm
Thank you! The joy is what I hope I can remember if the mobility goes back down hill. I feel like this must be what living is like for people without depression.
December 15th, 2019 at 6:43 am
This post was a lifeline today. Thank you. If you ever wonder, and we do don’t we, you make a difference—at least to me. Peace and blessings that you’re dancing all through 2020.
December 17th, 2019 at 1:28 pm
We do! I never feel like I’ve written anything anyone will want to read, let alone actually read. Your comment made me so happy. I don’t know what you’re going through, but I’m going to tell you this: the depression, the pain, the thousands of times I wanted to just not be here anymore, were all worth it. Not because I’m walking, but because I’m happy. Somehow, someway, I’m in the light and I want to pull everyone in with me because I know how dark it can get.
Much love to you ❤
December 15th, 2019 at 7:59 am
I love this! Even though we were never real close, I still love you and appreciate everything you did for me and my family!
You’re a very strong, smart, beautiful woman!
Keep on keepin’ on! ❤️
December 17th, 2019 at 1:31 pm
Oh, Amanda! I don’t feel like I did much, you goofball. Thank you for reading and taking the time to comment. It means so much to me! ❤ (I just figured out how to make that heart emoji, lol!) I hope you are all doing well!
December 15th, 2019 at 9:36 am
I am so happy that you are in a period of (mostly) pain-free life. The sadness I feel is being juggled with the joy of knowing you’re feeling so much better. I only pray this is something that continues. Maybe there will be something new in your tests that show why you’re feeling so much better so suddenly.
Please have a happy and pain-free Holiday and New Year!
December 17th, 2019 at 1:14 pm
Thank you! I don’t know what is going on with my body, but I almost feel like going through all of that healed my heart. I keep waking up happy to be alive, and that’s a totally new and amazing experience. Thanks for being here, and taking the time to read and write to me. It means so much.
December 17th, 2019 at 8:26 am
Absolutely love your candor in your blog and very happy you’re able to dance and sing! If you’re looking for a potential resource, check out White Swan Charity. It’s a charity set up to use technology and prediction analysis to improve health and wellbeing. The founder’s sister was having medical issues that caused her to be wheelchair bound and deteriorating quickly. Doctors couldn’t figure it out so he used algorithms to analyze social data and discovered his sister had a very rare but treatable form of Parkinson’s. She is now able to walk, hike, etc. There is always hope!
December 17th, 2019 at 11:50 am
Thank you! I’ll definitely check that out. Right after I get done grinning from ear to ear that LAURA READ MY BLOG! I don’t know if it’s from going from so bad to better or what, but I swear, I have not felt this free since 5th grade GT. I want to talk to every person with depression and tell them how good it can feel to be alive. And. I WANT TO KNOW ALL ABOUT YOUR LIFE.
December 18th, 2019 at 5:38 am
I’m so, so sorry to hear about all the shit you’ve been through recently. I’m glad you’re feeling better now, and hope it continues to improve.
December 20th, 2019 at 10:56 pm
Hey, it’s my favorite stormtrooper! Thank you! I feel like I read that you were having a hard time awhile back, and I meant to say something but…depression makes me a terrible friend. Trying to be better.