Meaning in the Mud

Family, Friends, Strangers, Enemies, Grandmas, and the future class of 2019: hi. I’m not dead. Figured I should get that out of the way.

It’s been so long. I’ve missed you. I’ve missed writing here. I have an underlying angst that eats at me when I know zero words are emitting from the blog of roughly 12 readers a day. Still, I don’t like it. Mostly because I still so often spend hours a day writing, , but reading it back over it the next day, the coherency is lacking and it’s clear my spaghetti brain is hindering a collective blog, so I don’t post it. The next day I write, I try to edit, and the process just repeats itself. All of it resulting in DEAD AIR! Boooo.

Anyway, as you might’ve guessed, I’m still crashed. Or on very shaky ground anyway, and I’m not really sure why. Weakness comes and goes, my restless legs/crawly skin is constantly flaring, but it’s this damn pain in my head that is consuming, constant, and just plain exhaustive. More than weakness or any other symptom, it’s a resilient pain like this that keeps me from writing long enough to edit and post, which makes me hate it all the more.

This head/face pain started to get to me psychologically a few months ago. I’d find myself looking forward to sleep given the escape it offered from the pain. That’s not a grrrreat way to live, but it is A way to live, so there’s that. It’s just the reality right now, but I do genuinely believe we’ll find the answer to this. Or we’ll at least find a remedy for the pain. Even if it is some South American JuJu bean sprout mixed with Norwegian honey bee oil and antler-fuzz brewed into a tea. I’d drink that crap-tasting tea 10 times a day. The point is, I know it won’t feel like this forever, so I’m just hanging on and HOPING THAT A FIX COMES ALONG PRETTY QUICKLY. Sorry I thought if I shout-typed it that God or someone might hear me better.

For now there is pain medicine, dousing my face in peppermint oil, and putting a frozen ice pack on top. Then I lay there, like a useless slug waiting to get stepped on. I’m destined for greatness!

IMG_0309 2.JPG
#Useless Slugs Unite

On Monday I had my face injected with steroids and lidocaine to see if that would do anything. I do think it helped the back of my head, but so far not a lot of luck on the face or top of the head. Although the injections did give me temporary human horns, appropriately in time for Halloween. This picture is actually after they’d gone down a bit.

She-devils Unite!

Walking back into the waiting room I told the secretaries not to judge my she-devil horns and they burst out laughing. I guess in a place that is usually so serious and nearly tense like the sign-out counter at a doctor’s office, something about that interaction made me feel lighter. 

Other than that, life remains a constant search for balance in-between hope and despair. Obviously, it feels much better to be hopeful. But damn if despair doesn’t grab you by the feet like an anchor and drag you under. It can be so easy to fall down that hole, and much harder to make your way out.

I know I write about it a lot, but it’s because chronic illness is such a marathon. Staying optimistic, believing your life can be good, finding meaning in the mud, laughing when it’s funny even though it’d be just as easy to cry, are all your job on top of the physical battle. It’s so hard not knowing where the finish line is or what it even might look like once you get there. If you’re like me, you’re always trying to calculate how your life might go if you’re sick 2 more years, 5 more years, 20 more years. It’s infinite…

It’s an impossible hypothetical that will only leave you confused and anxiety-ridden. Marc Nepo said confusion is the result of trying to make sense of things too soon, and I am constantly trying to do that. Make things fit before they’re fully formed. It’s hard to trust that wherever you are is where you’re supposed to be, and yet in hindsight, it seems that somehow it always turns out that’s the case, even when things have resulted in pain or anguish.

Nepo also said the repeated hindrance to joy in his life over and over has been hesitation. So I’m continually trying to just live the moment I’m in–1 because honestly it’s all I can handle. But 2 because when I start thinking too far into the future or assuming I could possibly change things that have happened in the past is when I actually suffer. When I interrupt my thinking and say Mary, all you have to do is make a cup of tea right now, I’m brought back to the only thing that matters and where I have any power, which is now.

It’s been an interesting experiment, this whole chronically sick life thing that I think I may have signed up for ambitiously before I was born because I’m stupid and don’t think things through. Still, it’s interesting, because it’s a perpetual challenge, especially creatively and in thinking. Like this idea–that you can be in a lot of pain, but also laugh hysterically in your living room, alone, at something you’ve seen twice before. This week I was watching jeopardy casually with my parents and I filled up with an overwhelming sense of gratitude, and despite my raging head and restless, squirming legs, such a strong positive feeling made it’s way to the surface anyway.

The same happened when Matt brought me lunch out of nowhere on Tuesday, because he happened to be eating at a place nearby. I had a migraine, but when I woke up I had a meal to eat and didn’t have to think about it or muster the strength to make one. Just deciding on food can be totally exhausting. My gratitude was overflowing. And when Monty was afraid during the rainstorm and I laid with him on the floor, because I could, petting his velvety ears as the poor guy shook with fear at the rumbles of thunder, the love I felt for him welled up inside me, to where I could feel an actual warmth in my chest. I think how lucky I am to have such incredible people (and dogs) in my life and it makes the physical pain feel less powerful.

There are many, small moments like that, where gratitude and humility and laughing out loud at something stupid all pop up and show their beauty despite whatever physical pain I’m feeling. The dichotomy of those two things and experiencing them at once is an intriguing piece of the puzzle that’s teaching me how to be a human being. I think I’m getting pretty good! But I’ll never be as good as Monty, the happiest, most grateful, and present person I know.

Actually Destined for Greatness

Case in point, he was not at all upset when his ball became stuck under a huge flat rock that was filled with muddy rain water underneath. He spent 30 minutes digging and splashing and maneuvering for that ball, and a half hour later he came trotting to the porch, a newly chocolate lab, victorious with said ball that was almost a goner. Seeing how happy, proud, and brown he was made me laugh so hard, I couldn’t help but feel happy to be alive, despite feeling like death. Witnessing the fulfilled, unflinching life that Monty lives, it’s fair to say that dog does not hesitate or miss lifes’ moments. His joy is infectious, and I will always be grateful he’s been by my side for as long as he has.

My head is starting to fill with pressure and expand like a balloon, or so it feels, so it’s time to slug it up for a while. Then maybe I’ll enjoy Wheel of Fortune with my parents. See? I have to laugh at it. Was this the life I envisioned at age 34? Would I have chosen this? Maybe not. And yet I am learning, learning, how to find a sense of fulfillment and wander in the unchosen existence that is uniquely my own all the time. Each time I inch toward trusting this experience, the more momentous life becomes, the brighter the mundane moments explode into something special, and the more my soul awakens at how incredible it is to be here at all.

Health, Happiness, Muddy Waters

6 thoughts on “Meaning in the Mud

  1. HAAA too good. That’s really when life gets good, when your dying (especially in the head. Game ender.) and you find yourself thinking “Aah, isn’t this just incredibly, painfully beautiful, death?”, and sometimes, life isn’t as beautiful as when you’re suffering, because suffering is what makes being human unique, says me.
    I watched a documentary on Netflix a couple of months ago about people with mysterious, incurable diseases. It really struck me how much acting is a part of chronic pain for most people. You feel you have to act sick so that people will see how sick you really are, because it’s nothing that’s visible since you’re so good at dealing with pain that would have the average Joe running to the ER. In fact, the acting is a part of what makes people not believe you, and it’s this Catch 22 that I am totally guilty of. The average Joe would watch that documentary and see all the acting and posturing and think yeah these people are full of it.
    I’ve never seen you do that. You’re the poster child for chronic pain because maybe…you believe yourself? Don’t care what others think enough to play a part for them? You just lay it out there like it is, sculpt it into something beautiful. Experience. It helps people laying in their perspective beds to ponder the truths of themselves.
    Thanks sis.


  2. Hi Mary,

    I just read your blog, and it grabbed a hold of my heart like it always does. You have been amazing through it all– so courageous and strong. Just want you to know that you have always held a special place in my heart. Is there any way I can help you? Please let me know. Love, Cora Macormic

    On Sun, Nov 11, 2018 at 11:49 PM FibroM.E.-Awesome wrote:

    > Mary Gelpi posted: “Family, Friends, Strangers, Enemies, Grandmas, and the > future class of 2019: hi. I’m not dead. Figured I should get that out of > the way. It’s been so long. I’ve missed you. I’ve missed writing here. I > have an underlying angst that eats at me when I know ” >


  3. you’re not alone, I am beginning to have constant neck pain from an MVA six years ago. That combined with my fibromyalgia the PTSD and depression that started from the same MVA and a bad knee from same and and and…… Well it’s not always a great day. I don’t always reach that many goals Anymore but on the days that I do reach even one, well I count it as a good day. I hope you do as well! And I hope your head feels better real soon, having chronic neck pain combined with all the rest of it gives me a constant headache.


  4. Hi. Thankyou for somehow finding the energy to share : it means a lot to know we are not alone in going through this. For me, as of 3 days ago it has been 43 1/2 years – not that I’m keeping count or anything! The one thing that keeps me going is the hope that life will not always be like this, so much has been wasted already. The Internet is a blessing : ) Be encouraged, just as you are encouraging others…


  5. 1) I def do the 2 yr, 5 yr increment calculations too about the future. If I see a study with some topic that might produce a treatment, it’s hard not to think and calculate when it might be available and might help. It gives some hope, but then I try to return to the present. 2) Have you been evaluated for a spinal fluid leak? Preferably by Dr. Carroll at Stanford or someone very thorough? They are often missed, I’ve heard. 3) Did Botox make you feel sick/ill/more exhausted and for how long approx? I know sometimes hard to tell when multiple things in the mix. I’m 26 and in a super similar position with headaches (chronic migraine, occipital neuralgia, TMJ headaches, tension headaches, forehead and face pain with aforementioned headaches) and ME etc. Wishing you only good things and answers!


Leave a Reply. Monty's bored.

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.