October, 2017
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hashtag me, too
When I saw the first #metoo post in my FB feed, my stomach flip-flopped and I felt a lump in my throat. I was overwhelmed with emotion. Let’s be honest ladies — we don’t talk about it. We never have.
Quite awhile ago, I told my husband about something that happened to me in college. I circled around the issue, I argued for and against. I justified, made excuses, twisted it up so much in my mind that I wasn’t sure exactly what had happened anymore. I knew how I felt then, I know how I feel every time I think about it now. Confused, scared, gray. But could I tell you the details? Not all these years later. I know that when it happened, and I talked about it the next day … or maybe it was several days … the reaction wasn’t good. It wasn’t accepting or understanding or sympathetic. It was distant with the acrid underlying of suspicion. If I hadn’t known before then — and I probably had — we just don’t talk about it. We soldier on. We endure.
I’m not a stupid girl. I have never knowingly put myself in silly situations. I’m quite certain I’ve never “asked for it.” I’m strong and I’m smart and it has still happened to me. More than once. In more than one environment. Being smart or strong doesn’t make you immune.
Several years ago something happened at work. It made me feel very uncomfortable. Very vulnerable. Kinda gross & icky. The reactions from co-workers were the same as the reactions had been in college. Even the sympathetic eyes were guarded, silent. No need to be drawn in. Just move on, forget about it. For God’s sake, stop talking about it.
My mother, on the other hand, was appalled. She immediately called for my resignation. My father was quiet. He didn’t say much of anything. Maybe he didn’t know what to say. Maybe it’s all so ingrained in us that this is what happens. This is what we must overcome.
I didn’t quit. I stayed. But I never forgot.
The thing is, the #metoo movement means more than just violent rape at a college fraternity party. It means more than stereotypical ideas of sexual harassment and assault. It is the idea of bringing attention to a systematic thought pattern in our society. That not only is the habitual act of sexual harassment wrong, but also wrong is the idea of shaming those who choose to talk about it. Those who would like to make a difference.
As a woman who has experienced a myriad of sexual harassment and discrimination, I have stayed silent because I felt powerless. Who would believe me? Would it be worth the inevitable pain and suffering of bringing things to light?
I’m okay. I have soldiered on and endured. In many ways, i have forgotten. But that doesn’t make it alright. It doesn’t make it acceptable and forgiven. It is a tough, painful thing to contemplate, to consider wading through to the other side.
In the end, we are all human. We should all treat others as we would like to be treated. (Although this calls into question if all people want to be treated as we ourselves would like to be treated ….). We should treat others with decency and respect. With thoughtfulness and kindness. Unfortunately, we do not currently have a leader who demonstrates these things. That makes it challenging. It makes the going feel tougher than it should.
I stand in solidarity with all the women, all the humans, who posted #metoo. I stand with you in strength and in understanding and with love and compassion. I know how hard it is to admit these things that we have swept away, that we have hidden under layers of defenses and justifications. I stand and I hold my head high. Because even though it’s hard to comprehend sometimes, I didn’t do anything wrong. And neither did the other women who have suffered in silence.
sometimes
Sometimes it’s virtually impossible to be positive.
Despite this blog and my obsession with Instagram ([at]simplygwyn if you are curious) I’m a pretty private person. I don’t relish in other people’s misfortune (or fortune) and I don’t always like to share my own. Have I had tough times? Oh, yes. Have I had amazing triumphs? Yes, it could be said. Do I tend to share those specifics either here or via my social media identity? Usually not.
Today has been a brutal day. For many reasons. MS, obviously. I finally slept through the night but I woke up exhausted and without motivation to do anything. Feeling that way is frustrating, sometimes as though I’m watching myself through a thick pane of glass, all the details blurry and no way to communicate to myself. It’s hard for others to understand — there’s nothing physical that signals my distress, my struggles. I look fine, so I should be fine. I discriminate against myself using that logic all the time.
When you start a day feeling listless and then one thing after another pummels you — it’s very hard to rally. I rode my bike — something that helps sometimes, but doesn’t always. I did one of my longest rides ever — 32.1 miles in 90 minutes. Yay! Go me …. I think.
John got home close to 4pm and brought in the mail. Yup, I’d been such a slug all day, I hadn’t picked up the mail on Lucy and my afternoon walk. It happens folks, that’s the reality of my life. In the mail was a delightful form letter from our new insurance advising me that after review, my MS medication would not be covered and all future costs would be 100% our responsibility.
Whomp. Whoosh. Air sucked out of my lungs, tears stinging my eyes. And this was at the end of an already brutal day.
I’ve been on five drug therapies for MS. I’ve read all kinds of blogs and posts about controlling MS without drugs. I drink green smoothies religiously. I can be enormously fussy about the food I eat. I work hard every day but I cannot NOT be on medication. Before Tysabri I had Lydia (my cane, for those who weren’t reading my blog in 2014). I could barely walk up stairs. My disease progression was aggressive and scary and bad. And now, here I am. Blue Cross Blue Shield of Michigan has decided that they won’t cover the only medication that has ever worked for me. Somehow, a huge insurance company now controls my life. Literally, my life.
Today, it must be said, has not been a good day.
doctor daze
Now that I’m in my third year of Tysabri I get to see Dr. M four times a year — every three months. Plus side, only two of those visits require MRI scans. Minus side — it’s four times a year I feel outside of myself, unable to articulate myself, overwhelmed by fear.
Yesterday, as John and I made our way back to the car, hot tears stung my eyes and I clutched my paperwork tightly in clammy hands. I’d felt five years old in that office. I’d felt out of my depth, unsure, wrong. It’s a terrible way to feel.
I go to see Dr. M armed with a list of queries typed haphazardly in my phone. I don’t know why I even bother. The answers are always the same. It could be MS. It could be something else. It could just be aging. It could be something different entirely.
Do doctors want us to spend our lives in and out of waiting rooms, forever chasing answers to unanswerable questions? Here’s a referral to a urologist, one for a psychiatrist, another for a gastroenterologist; here’s one for a DIFFERENT neurologist, because that’s not in my realm of practice. Perhaps also a cardiologist?
Clearly, all us sick people have copious amounts of time and energy at our disposal to spend time on the phone (making appointments, haggling with insurance, etc etc), driving to and from all the appointments, following up on treatments and recommendations. It’s a true joy to be told the same thing over and over.
They just can’t be sure. It might be this, it could be that. Have you seen so-and-so yet?
And it’s not just me. It’s my mother, my father-in-law … so many other people struggling for answers, for a direction.
As we approached 95 from 76 I turned to John. “I think we need to make doctor days sushi days. Can we do that?” He smiled and nodded.
consequences
I’ve been thinking a lot recently about consequences.
A little bit about how as we get older, we are much more aware (wary?) of the consequences of our actions. Some thoughts about how when we were young other things informed our decisions – fun, experience, etc.
Sometimes consequences have to be dealt with even if we wouldn’t have chosen the action. I deal with the ‘consequences’ of MS every day, and I have to admit, I mostly wish I didn’t. But here’s the thing — some consequences of this disease have been good. I’m infinitely healthier than I might otherwise have been. I get more sleep, I eat better food, I work out a.lot more than I ever might have. I drink a ton of water every day. None of that is bad.
But I also have to think about everything. If I do something physical, what are the risks of hurting myself? If I hurt myself, how long will it take this broken down body of mine to heal? I recently went to Hilton Head for a few days with my parents. We drove down (it’s a long ride in the car, let me tell you!) and I flew home. I tried as hard as I could to maintain normalcy for this finicky body but despite my best efforts, I spent about 36 hours after getting home trying to recover. From what, you ask.
Excellent question.
From life. From the dehydration I accidentally caused myself by not keeping up with my water drinking. From the strange schedule that my body couldn’t find the rhythm to. From fatigue caused by not sleeping in my own bed, in my own sheets, with my ceiling fan and window.
I know, this all sounds ridiculous. I need to buck up, stop being such a fuss pot.
I one thousand million trillion percent agree.
Only, it doesn’t work like that for me anymore.
I quit my job at the beginning of the year. For many reasons. Being wildly unhappy was the final catalyst, something I’d pushed down for years (I understood the consequence of giving up my salary and wasn’t ready to take the leap for a long, loooonnng time. That maturity and awareness had not informed my earlier years of job hopping because I didn’t think about the financial consequences quite as much in my early to mid twenties and before MS).
Anyway, I quit my job. As the months have passed, I’ve come back to myself in so many ways. I’ve remembered who I was before I was so completely miserable. And I have also become more aware of how everything — and I mean everything — is affected by my disease.
Which brings me back to consequences. Every action I take has a consequence. In some ways, our lives are the result of the consequences of our actions. Every time I decide to stray from my routine, my body manifests the consequences. I’m not one of those people who can pop an Advil or two, drink a tall glass of water, and not feel the effects of a day at a bar the next morning. I feel all of the effects. Pain in my body from sitting on a bar stool, pain in my abdomen from eating too much processed food, pain in my head from having one too many glasses of wine (despite also drinking a water with each one). And worst of all, the pain of unrelenting fatigue.
Here’s the thing, too. Sometimes, adrenaline keeps me going for a few days. When I was in Hilton Head, i didn’t feel bad. I felt a little sleep deprived but nothing horrible. It wasn’t until I got home that my body succumbed to all that ailed it. When I was working, I pushed through. I knew my responsibilities and I got things done. I didn’t really feel the fatigue or the emotional toll it had all been taking until it was over, and my body collapsed from the sustained effort to keep going.
It’s a delicate balance, the art of considering the consequences and choosing what to do and what to pass on. I know that people must look at me sometimes and wonder what my problem is. “But she looks so healthy! She looks better than she used to look!”
Yup. But I don’t feel better than I used to feel. I am not, in actual fact, healthy. I mean, relatively, I am. But I still have a disease eating away at my brain and spinal cord. I still have to journey to the hospital every twenty-eight days to be infused with powerful medication. I still feel the slow deterioration of my abilities. I am still so, so, unbelievably tired.
So yeah. I’ve been thinking a lot about consequences. How to minimize them. How to choose wisely. And I’m still so, so tired.
D5 Creation