(Warning -- this is a long one.)
Most of you know I've been fighting some level of pain for a long time. I finally have news.
Four years ago, my life-long migraines took a bad turn.
The good news -- I've been in "remission", if you can call it that, only experiencing bad headaches when the weather changes.
Two years later, the degenerative disk disease I had in my back and neck since I was 22 became a serious issue and I started getting epidural shots for pain.
The good news -- the doctor has nailed down which nerves are being compromised and I'll be having them cauterized soon.
Around November of last year, though, I started noticing my joints and muscles were aching. Then burning. Then swelling. I would run a low-grade fever off and on for no good reason. I continued to feel completely exhausted ... that bone-crushing tiredness that robs you of the ability to do much of anything. I had days when I couldn't drive Zack to school, even though it was a five minute trip. I found myself spending 90% of my time in bed. I started losing hair. My hands hurt too much to hold jewelry tools and the pain would wake me up almost every single night.
Pain medications didn't work.
I've written rather freely about my lifelong fight with depression, but with chronic pain comes a special brand of depression, and I found myself putting all my hopes into first this doctor, and then that one, and then yet another.
Recently, after a particularly devastating doctor appointment, I couldn't shake the despair. I can't do this anymore, I thought. As I drove back to my home over the Bay Bridge, a bridge that normally gives me chills, I had a sudden, terrifying clarity of thought.
"You know ... you could jump."
The thought was so searing, so completely overpowering, that I actually slowed the car down.
I've tried to come up with words to describe exactly what I was thinking at that moment, but I've had weeks and weeks to think about it and I still can't describe how terrifying it was to actually consider leaping from 200 feet -- something like twenty-five stories. All I could think of at the time was how amazingly peaceful it would be to swan dive and finally, forever, be pain-free.
Luckily, I came to my senses. Even though I've felt like less of a mother for being constantly tethered to a bed, I couldn't possibly leave my precious little boy. But those few moments scared me. I drove the remaining thirty minutes home and immediately contacted a friend who has been a lifeline, a pain pal, and a serious source of common sense while still remaining empathetic and kind. While I sat in the school parking lot waiting to pick up my son, this friend kept my head above the proverbial water. I got home to my husband, who held me while I cried, and he stayed home the next day while we continued our search for answers with another doctor.
In case you're wondering, I'm under good professional care, and while I still have dark days, I no longer have days where I question living. I'm not done here on Earth yet. I don't know what my ultimate purpose is, but my purpose right now is to be a mother, and I have to be present to do that. Some may think it was extraordinarily selfish or insane or even ridiculous to consider suicide at all. To those I say, be very thankful you've never visited that dark place, because it's not always easy to back away from the edge. Some may wonder why I risk people's opinion of me by writing about something so enormously personal and polarizing, but I don't care. If my story helps just one person step back from that edge as well, it's worth it.
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| View from my backyard. All storms do pass ... or at least turn to gentle rain. |
With the help of my husband and a few friends, I soldiered on, dutifully marking down one, two, three, a dozen doctor appointments on my calendar, wishing for a name for what was wrong with me, because I was starting to think maybe it was all in my head after all. How could I hurt so badly but no one could find anything wrong? How could I look fine, but feel so miserable?
Finally, at long last, I have an answer. I've had to spend some time wrapping my brain around it before writing about it because it can change my entire life.
There is indeed a certain freedom of spirit in knowing the name of your fear because knowing the name means I can get treated. In my case, my fear has two names -- lupus and rheumatoid arthritis.
Lupus is a chronic autoimmune disease that affects skin, blood, joints, and/or kidneys, causing inflammation and pain. It's not contagious (so please hug me when you see me!), and while there's no cure, there are treatments. Lots of people have it, and during my long search for "what's wrong with me?", lupus was one of the things I wondered about. So I was prepared to hear that.
What I wasn't prepared for, though, was the additional diagnosis of rheumatoid arthritis. This has been harder for me to make peace with.
Rheumatoid arthritis (RA) is also a chronic autoimmune disease with no known cure but treatments available. It causes pain, stiffness, swelling, and loss of function in the joints. It is really a rotten thing to have happen to your body, but for me, it's
losing function in my hands that has me reeling. While we've apparently caught it early, I have to understand that I could lose the ability to do things like beading, playing piano, typing, handling a kayak paddle ... the mind boggles.
At first I was angry. Then sad. Then angry again.
Now I'm ready to fight it.
My way of dealing with bad news is to consider all the worst case scenarios first. This may sound defeatist and all sorts of wrong, but if I'm prepared, if I know what the worst can be, I can process it, then shelve it and move forward. If I know what the worst can be, then I'm happy and pleased when things turn out for the better. And if they DO happen to go wrong, I'm not caught unaware and can deal with things much better.
This could actually all be a good thing for me. People talk all the time about living each day as if it were your last, but rarely do. However, when you're faced with the very real news that your ability to do the things you love is going to be challenged, it suddenly takes on an entirely new meaning. I've made a list of things I MUST do, things I WANT to do, and things that can wait because they just aren't that important any more. I was going to start teaching Zack piano this summer -- must do. I want to learn to juggle and play the guitar -- better start. I want to, I want to, I must....
I WILL.
I've already started spitting in the eye of the bad news and creating a new life. Yesterday, my friend called me up. Our kids were out of school for the day, so why not try out that new indoor trampoline park we'd been talking about all year?
Oh, absolutely. Grab the car keys, baby, we're there. Sure my body aches. But I don't care today.
When I paid for our entrance to the park, the cashier asked if I was going to jump, too. It took me no time at all to decide.
"Yes. Yes, I am."
I'm paying for it today with more pain than usual, but I don't care. I was a cool mom, I giggled, I enjoyed my life for that hour in the park, bouncing and watching my son laugh and run with friends. The irony didn't escape me that this, THIS was an entirely different type of jumping. This time, the decision to jump was a good one, a healthy one, and a proud one.
One day I may have to sit on the sidelines, but not today.
Not. Today.
Tuesday I go back to the doctor to start a treatment plan. I have no idea what life is going to be like now, but I'm ready. It's not always going to be easy, but I'm ready.
I'm jumping in with both feet to take control of my life back.
Hug the ones you love.
