The Longest Road

"I may have Fibromyalgia, but it doesn't have me."

I used to read that quote... way back in those early days, sitting on the floor (back when I still could!;), searching and searching on dear ol' Google, desperate to figure out what the heck to do with myself and this sudden information that I was sick. And not just sick, but sick sick. The kind that wasn't going to go away.

I sit here thinking back (and it is so true what our parents have always told us: the older we get, the more time seems to speed up. Something that happened 7 years ago blends just as seamlessly with a memory from 2 or 3 years ago)and so many things have changed, even though it feels like yesterday. 

(I have changed)

I really lost myself there for a really good long while. Four years can feel like four years, but it can also feel like 100. When you are vibrant and young and busy and ignorant of real, true hardship, you honestly do get thrown into wonderland at this kind of news. Because credit card debt is real, the dramas of our own lifetimes- family, jobs, relationships- are real. Having cancer scares, and miscarriages, and being in an abusive relationships- all of that is very real. But...

But...

When a doctor looks you in your face and tells you that you are never, ever going to get better....

You discover very quickly that all of those other burdens were child's play.

It is true: “When you have your health, you have everything. When you do not have your health, nothing else matters at all.”- Augusten Burroughs

You suddenly get thrown into this dark and confusing, oh so ugly pit. You are sick, and many more doctors are going to diagnose you with even more illnesses, or else belittle you and tell you it is all in your head, "you are just way too young to have these problems." You are going to look the same on the outside, and you are going to try to be normal, even though the sickness is inside of you- already changing things, already settling in, already shoving you around like the bully on the playground. You will try to keep other things as a matter of importance- social events, routines, basic living. You will try and try and try to ignore that you are slowly losing the war against your own vessel. For each day of chronic fatigue, for each stab or pull or bruise of pain, for each emotional outburst.
You will think you have finally (a-ha!) mastered this thing, right before it knocks you on your bum again, and the cycle continues on repeat like a record skipping on the player.You will feel isolated, and want to hide, and delete social media, and not be able to handle the massive stress of simply enduring each day. There will be days, maybe months of feeling triumphant, and others where you will be in denial, or be so depressed you cannot fathom another moment like this one. Every day will be the same- the only difference being where and how the pain is going to manifest that day. There will be so many appointments, so many treatments, so many people who will not believe you are actually ill. They will actually think you are faking it! Like it's some fun thing. And you won't be able to laugh about that for a long, long time. But one of these days, you will. You will realize that it really doesn't matter what anyone else thinks. You will think back to those times you threw potato chip bags, or snapped at the clerk at Safeway, or were freaking out by all the noise. You will chuckle a little and be grateful for ear plugs, and bathrooms to actually rest in when you need a break from all the sensory input. You will get only mildly annoyed at all the unwarranted advice from friends & family, instead of wanting to wring their necks (as if you are not proactive about your own health!), and you will realize how much of a champion you really are. You have done this! You are still doing it! You have Fibromyalgia, and you have gone and are going through the ugliest, worst time of your entire life, and you are still breathing, and trying, and fighting back.
You are strong, and brave. So very brave. '
You will still be sick, you will still get overwhelmed or stressed, but you will learn that it will pass, and that it doesn't signify the actual end of the world. You will stop needing to prove your illness. You will stop linking yourself to it like some definition of who you are. It will become separate from you, even as it is one with you. You will no longer have to announce you have Fibromyalgia, unless it serves a purpose. You will no longer need to explain every ache or pain. You will start to be able to be compassionate to other people again when they complain about headaches, or one night of lousy sleep. You might still be a tiny pinch bitter on your very worst days, but you'll learn how to put yourself second again some of the time... though now you know you must be first when it comes to taking care of yourself. Old facets of your personality will start to reappear like a shy, long lost friend. You will enjoy activities you used to love- because you will have learned to modify them, or say no to what you actually cannot handle anymore. You will realize that even though Fibromyalgia took away choices, it has also given you some. Like when to say no, and how to assert yourself in a less arrogant way, or how to be humbled by needing help with so many simple things. One night you may even laugh at trying to open that bottle of water instead of wanting to cry. You will find some kind of balance- not A balance or THE balance (sick is still sick and the journey is continual), but some kind of balance. That constant feeling of being a disappointment, that fear of bad news will ebb and flow, but eventually you will anticipate good news too. When an anxiety attack bristles in your chest, you will take deep breaths and pray, or talk yourself into trust. It may persist anyway, but you still try to relax instead of freaking out. 

And now, looking back, I can see that girl in my mind. Scared, lonely, and not even knowing which way was up.
Sometimes I still marvel: is this my life? Do I really take all of this medication every day? When did it become just as normal as brushing my teeth or going to the bathroom? It seems impossible. I still remember coming back from the appointments where I got all the injections, I remember bleeding and throwing up in the movie theatre, and finally getting treatment at the Fibro clinic- sitting on the bed with all those prescriptions and supplements, getting all the test results-all of this and so much more, and it all feels like yesterday.

See, I don't say this because I have it figured out. I most certainly do not. I'm still learning, still deadly desirous to know what causes all of this, how much do my other viruses and conditions contribute to the Fibromyalgia? Its all still this big mystery. And I have my moments.

Those feelings of isolation,
fear,
all of it.

Yet here's the thing...

Recently I went home again (where my roots are, where "the me" became and grew and thrived)and it was like I suddenly stepped into who I am now. Not just from going back in order to move forward, but in everything. In remembering where I came from, I realized just how very far I had come.

And it feels beautiful.

It feels like standing in cold, delicious water after being drenched in sweat. It feels like that joy in your chest when you watch your baby girl laugh at something. It feels like

freedom.

Like the hardest part of the climb has been done,

the part you thought would never end,

the part that almost killed you as it broke you from the inside out.

And now...

now you are standing on a higher point. Not quite the top, but almost, almost... maybe if you strain a little you might be able to see where the steep incline smooths out up so high.

I went home, and I felt all of my lives. My youth, and my 20's, and my now- and I fell in love with God in a deeper way. I listened when He reminded me of my worth. I leaned in deeper when I felt my heart laugh and lift and hang so light. I remembered that I am still me. I am still worthy. I am still wonderfully made.

Sickness has robbed me of so much- my lifestyle, my friends, my dignity, my everything. Never would I have imagined it could also give me things too...

Things I thought it took, but God was merely refining...

like compassion, and hope, and happiness found in the simple. Like soap, and hot water, and the taste of tea when its not too hot, and not lukewarm.

This just right place.

Not knowing everything, yet knowing so much more than that girl 4 years ago.

For the first time in years, I feel like Janet. Not the old me, but NOW.

Not ashamed to use the motor carts at the store,
not worried what people think of me,
not in need to prove the validity of my sicknesses,
not afraid to erect boundaries and feel no guilt,
not concerned with trying to be someone I no longer am.

I am sick. That's a fact. I am disabled, but I am also strong in spirit. I can still talk, move my hands, take a hot shower, eat food. I am blessed. I am lucky. I recently lost a dear friend. He was in a wheelchair and had muscular dystrophy. But that isn't what I remember about him. I remember his laugh. How his eyes would close and he would get the most delighted grin on his face. I remember how we listened to 80's music in his van, his sense of humor, and how he didn't pity himself because of his limitations. I remember his chivalrous attitude, and his kindness. I miss him every day. But his death taught me how to live again. That was the start, and ever since that day I learned of his death, it seems the climb has intensified, and now I am standing on the edge, arms wide up, and a smile on my face.

I went home. To California. To myself.

And I know I still have limitations. I know it is still hard, and this fatigue pressing on my eyes, and shutting down my body is real. I know I am still sick.

But now I also know that I am more than this.

I am still of value. I am lucky. I have people in my life who have learned with me, who believe in me, who cheer me on, and remind me to rest and take care of myself. I can't even fully articulate what changed in my spirit. It feels like it happened overnight, but in reality it took literal years.

We have to go through it. When we are happy, we have to be happy. When we are frustrated, we have to be frustrated. When we get depressed, we have to be depressed. In feeling these things, in facing our demons, that is where we are fully stripped to the bare bones. Who are we beneath our clothes, our homes, our jobs, our marriages, our friendships, our religion, our likes and dislikes? There is nothing like sickness that will reveal the ugliest parts of our character. And then we have a choice- are we going to stay in the dark place or are we going to allow it to break us for the better instead of the worst?
A lot of discouragement comes the way with sickness. But so do many more opportunities to sit and feel the breeze on our skin, taste the sunshine as it kisses our face. We must be still, and in that stillness, He comes and pours into us. He reminds us who He made us to be, that He sees us not as we are today, but as we will be. He is still beside us- even when He seems so quiet.

I feel alive, and I feel grateful. My life is not perfect, and things happen that get me down, make me mad. I say fleshy things, I make mistakes, and the more I walk this road with Jesus, the more I realize that His love is simply mad crazy and there is nothing He won't do for His.

My heart is happy. I feel accomplished and victorious. 4 years of walking in a tunnel- dark, dark, dark with the occasional light. And now...

Now its open air, and it feels

fantastic.

I know full well that this battle is not over, but I know now that I can do battle.

And I will not let it destroy me.

Here's a quote that I read recently that really imprinted on my soul. It is truly beautiful:

"There’s a lake in Australia that looks like it’s full of pink lemonade. There’s a salt flat in Bolivia that reflects the sky and makes it look like you’re walking on clouds. There are redwood trees in California that have been around since before your grandparents. There’s a cave in Mexico with crystals bigger than your car. There are places in this world that cannot be destroyed, because they are so beautiful, and so sacred. There are places that remind us that we are more precious than we ever knew. Remember these places. Remember that we are a part of the earth, that we have that same beauty, that same magic, that same wonder and untouched innocence inside of us, breathing quietly and steadily. This world is so big, we forget that we carry it around inside as much as it does us.
You are allowed to be sad, but you can be other things, too. Be vast. Be everything. Be the sky. Be the pink lake, or the salt flat, or the crystal cave. Bask in how immaculate and astounding and deliberate you are."-Unknown

And this song pretty much sums up how I'm feeling about Fibromyalgia. About life in general.




*Currently listening to the Paradise Valley album by John Mayer.