My head has been a rocky place lately. I just completely randomly remembered a line from one of my favorite movies ever, Raising Arizona:
“Edwina’s insides were a rocky place where my seed could find no purchase,” H.I. McDonnough.
In my case, the line would go, “Beth’s brain was a rocky place where timeless insecurities, dark thoughts and catastrophic thinking took up residence and built extravagant condominiums as if they thrived on barren, stony environs.”
Or something like that.
But, watch Raising Arizona. Really, you won’t regret it. That movie is so full of awesome one-liners it’s making me giggle just thinking about it. Me, giggling! It’s a sound quite foreign to my ears lately. There are a few dynamics driving this grim reality that are kind of ridiculous in and of themselves. Imagine that things so basic like the damn weather could lead me to a near nervous breakdown! But here we are.
It started when I tripped on that rug. I wrote about it in my last post. There’s something about landing on your face and/or backside twice in two weeks that takes the wind out of a gal’s sails. There is nothing more terrifying than feeling like everything around you, indoors and out, is a potential peril to your person.
Basic things start to look sinister. Rugs, walkways, steps and curbs (even cats!) come to mind. Distances longer than 10 or 15 feet start to look like those expanding hallways in horror movies that just keep getting longer and longer the more you try to run to get to the end and you realize there really is no end and the monster is going to get you. It’s like agoraphobia, oikophobia and basophobia had a baby and created a generalized monster phobia that encompasses a fear of actually living any where in any conditions at any time. It’s a challenge, y’all.
Physical therapy has been a blessing and a curse. On the blessing side, I am getting stronger. That cannot be denied. Yay me! On the curse side, I’m getting better in increments so small they’re almost imperceptible to the naked eye. It would take the equivalent of an electron microscope to see the tiny improvements that are happening in my body that’s how infinitesimal these changes are. But they are happening. I have to cling to that fact with all of my pitiful strength because that’s just where I am in all of this.
I woke up that morning of my last PT session and I knew the minute my feet hit the floor it was going to be a bad MS day. As I did my now-daily stretches before getting out of bed, my legs were not following basic commands. Getting dressed was a ridiculous display of limbs randomly falling off of knees with feet remaining completely shoe-less.
I really like to impress Melissa with my teeny-tiny progress at PT and I felt like it wasn’t even worth going knowing how shitty my body was likely to perform. After the first round of 7 minutes on my bike and a few pelvic tilts, I was exhausted. I looked at Melissa from the mat where I was laying on my side resting and said, “You know what I realized just now? I realized I am never going to get ‘better.’ What we’re doing here is only making me better than before, but I’ll never be better, like for good better, because on any given day I can wake up and feel just like this and I have absolutely no control of when or how long it’s going to last. So being here, this thing we’re doing. this is just to help me make the best of this mess that doesn’t really want to be fixed. This isn’t intended to make me ‘better’ at all.”
Poor Melissa. I wonder if all of her patients are so existentially lost and dark? But do you know what she said to me?
She said, “Well, that might be true but what I just heard you say is that you are getting better at making the best of this or you wouldn’t have been here today doing the things we’re doing and even though they are really hard for you today, you’re here doing them so that means you’re not giving up and neither am I. I heard you say you’re improving! That’s so positive! I’m going to go get that rollator! Let’s practice!” And she scampered off while my face felt stuck to that mat by some kind of superglue.
Which brings me to the rollator. I’ve been resisting the rollator. You guys. I know you know what I’m talking about! It’s what I like to call the slippery slope of mobility aids.
First you get a cane. And that feels OK for a while and you’re stumbling through life all off balance. Then you get some trekking poles or crutches because you realize that two sticks might be better than one and even though you look like a sad excuse for an actual hiker, you suck it up and trek your ass around town.
After falling twice in two weeks, it seems, people in the medical field start to push you toward things that might offer you hope of a bit more stability. The rollator, that glorified walker with handles and wheels and sitting capacity for emergencies that lets you roll about with your own special support system on both sides. It looks like a cage. But it helps you move around without ending up on the ground! From there, in my mind, it’s only a short trip down disability lane to wheelchairs and motorized scooters and all the things you see old people zipping around on in the grocery store.
Let me stop right here and acknowledge the wrong-headedness of this line of thinking.
Objects that help us get around are inherently good things. They are not symbols of failure or limitation! Quite the opposite! They are beacons of independence.
For other people.
Somehow when you’re the one facing all of this independence it becomes a lot less “rah rah mobility aids!” and a lot more like, holy shit, this is my life now. I KNOW. I will get there. You’ve all given me such sage and wise advice on this subject and I’ve listened and I know you’re right. I intellectually and reasonably know you are right. I will get there. I mean, I have to get there, don’t I? Because earlier this very afternoon, I sucked it up and purchased this glorious machine for myself:
My very own rollator! Now when I’m out living my best life, and my legs feel wobbly and weak I can put this baby in park and sit my ass down wherever I happen to be! Imagine such a thing! A chair by my side at all times. Handles to hold on to. A little basket for my trinkets and treasures.
When it arrives on Wednesday next week I will practice getting it collapsed and into and out of my trunk all by myself like the independent woman of the world that I am. I will practice getting this machine into my very tiny trunk in my ridiculous new car that has the world’s tiniest trunk. Fuck it. If it doesn’t fit in the trunk, I’ll drop the top and toss that baby in the back seat. Isn’t that what convertibles are for???
Which brings me to the goddamn weather. How’s that for a transition?
I live in Pittsburgh. It’s not Georgia or Florida or even Tennessee. It’s relatively north! It’s not all THAT far from Canada! But it’s been like the seventh pit of hell here for the last ten days or so. Temperatures in the high 90’s, dew points in the high seventies. Relentless sun or relentless storms both which seem to have a paralyzing effect on my body. My limbs rebel in this kind of heat and humidity to the point where leaving my house for even the short distance it takes me to get to my car can render me useless. Yeh. Good times.
I look outside and I see the sun and the people enjoying summer and I want to stab them. I mean. Not literally of course. Just figurative stabbing. Why can’t I be them? Why can’t I be out there sucking up the vitamin D and laughing off my sweaty situation because hey, it’s summer! We’re all sweaty so pass me another frozen margarita and toss some burgers on the grill because I’m here to suck up some of that good, good summer loving.
There’s something less lonely about being stuck inside in the winter. I think it’s because everyone else is stuck inside too! There’s nothing to miss because most people are inside bitching about how cold they are and how much they hate snow. In the wintertime, we’re all in that long depression together! It helps that I don’t hate being cold and I kind of think snow is pretty (mostly until I have to walk around in it) but I am a cold weather person by nature. Come summer time, I’m shit out of luck. That’s just the way it is.
Summer makes me feel sad and alone. I am neither of those things! But there you have it. I want to love summer like the rest of you! But I just can’t. I have to hide from it, if I know what’s good for me, because it’s just not for me. I cannot bear it. I’ve had more rando sobbing going on this past week or so that it’s started to worry even me. I don’t do that kind of thing! Apparently, now I do. I’ve started to feel like a prisoner in my own home and it’s not even mid-July! I’ve got a whole lotta days to get through where I can’t be just walking around sobbing like a lunatic.
But then miracles happen! And the weather breaks. Take today, for example. It’s practically perfect in every way. It’s sunny. It’s warm. But it’s not humid, in fact, feast your eyes on this beautiful weather graphic:
A dew point of 48 makes my heart soar! I can leave the house! I can do the things! All the things!
Except for that I really can’t.
I can do a few little things. Like late breakfasting with my brother and mother where I got to drive to Bob Evan’s with the top down. Then I got to stroll through Target in search of an area rug that won’t actually try to kill me. And then right about at the check out line, I started to feel my legs crapping out. I kind of wished I already had my fancy new rollator because I might have plopped myself down right there just to take a little rest. My mom and I drove back to my house with the top down again, my brother stopped by to help me carry my parcels in my house (thank god because squid legs had commenced and there was no way I could have done it myself).
And now that my little summertime running around has ended I find myself here:
Catching up on some work and writing this ponderously long blog post to share with you all, while sitting outside! On the porch. Not sweating from my eyes! Just feeling a little achy but nothing too terrible. I’m enjoying this little thing. This little thing called decent weather.
So there’s the epiphany I promised so many words ago!
The next time the summer heat and sunshine makes me want to cry until my eyes empty my body of all liquid, I will remember that the weather will eventually break. And when it does, I can rollate myself where I want to go, if I want to go anywhere at all, because let’s face it, this porch doesn’t suck.
I will remember that nothing is forever and tiny increments are still better(ish). I will at the very least try. Because that’s what we do.
Debbie
July 7, 2018 8:11 pmOn the days that suck, I ask you to recall this comment: your honesty and rawness somehow calms me when I just want to scream a stream of profanities at the top of my lungs — but I’ll scare the grandkids, lol. Thank you for sharing your blog. My disease is different from yours: Complex Regional Pain Syndrome in both legs and feet. I’m in pain 24 hours a day. I seek out your post to see how you are doing and each time I’m cheering you on! Your tidbits—like the rollator—help me realize that I, too, will be adding such to my arsenal. I’m at war with my brain and it’s maddening. And it sucks. You have several gifts that you have shared — humor, great writing and persistence. I go to physical therapy and I try hard to see the progress. Your minute increments give me hope that I can adjust to my new normal. It still sucks. And I’m picking up the rugs.
bethnigro0212@gmail.com
July 7, 2018 9:26 pmDebbie that means so much to me. I’m guessing though our diseases are different we have more in common than we’d think! Now I’ll be cheering you on, too. Lots of love. ❤️
Lauren Fioresi
July 7, 2018 10:17 pmHey Beth,
Keep going girl, you just take what you get and keep going…Beth-style. That’s all you can do. I myself am realizing that although having MS can make you feel lonely and isolated is it because we hold ourselves back? If we all adjusted and used the necessary and quite frankly depressing mobility aides, wouldn’t we still be involved? Isn’t that better than nothing? I am struggling with this myself and I am having a terrible time of it. I find myself and that I have weak legs, drop foot, hyperextended knee, and now bilaterally weak hips. For the first time I used my father-in-law’s scooter. At first, I laughed my ass off. I almost plowed over my 4 year old and we laughed and laughed. Later, as my husband and I decided to “scoot” down the boardwalk, I found myself mortified. I felt so diminished. I was not happy. It didn’t feel like an intimate walk at all. What to do now? Well now…isn’t this a pickle. So, I agree to try the scooter to stay involved and I hate every effing minute of it. Wth. I ended up talking to my mother about it and somehow she put it into perspective for me. Something about Darwin. No, not the survival of the fittest aspect. The adapt or die aspect. She’s German, she can’t help herself. She can be a bit tough at times and a no bullshit kind of lady but she was right. Adapt or lose out on life, happiness, family, work, experiences, etc. Add whatever you want it fits. So Beth, I feel ya. I feel ya all the way. Instead of saying jeez my legs feel great and I didn’t have to exert all that energy, I just wanted to cry that people were looking at me. People with legs that work, and flip flops and shorts. All of these things that are off the table for me now.
I will try hard to get better, change my attitude and adapt. Because quite frankly, I don’t want to lose any more and be left with nothing. You are so insightful and I swear when I read what you right I hear my own voice and thoughts. You are awesome. Small but mighty, right
Keep rolling girl!
Lauren
parkplacestories
July 7, 2018 10:46 pmI haven’t posted in a while because my world has shattered. My soulmate, the light and love of my life, the other half of me……passed away in my arms May 16th. I still haven’t been able to come very far up for air……the pain of losing my love has become physical. And 2 months before, I found out that wheelchairs can be lethal weapons. I was at his nursing center visiting. They had just finished his shower and were putting him to bed. (He had a stroke 3 years ago that took the use of his left side completely.) I was against the wall with my left leg in between the footrests. They got him all settled in, so I was going over to bedside to visit. Well, I forgot where my leg was, so tripped over the left pedal and fell face first on my hands and knees. The fall knocked the wind out of me. He was going nuts….”are you okay???!!! Talk to me, please!!!” I took a quick inventory and could feel my kneecaps bruising. His aides came in and helped me get in a chair. Pulled my right pant leg up….yes, my kneecap was already a bright purple, and getting darker. Then I pulled up the left pant leg…..and about croaked!! My kneecap was bruising, and about 7 inches below that, and a little right of my shin, I had a bump that was standing up 2 inches. I also had scratches down my leg to the front of my ankle. Everything was starting to throb. I very carefully got up, went over to my love, and said, “I love you, but I am going home and put ice on this!!!” Hugged and kissed him and went to ER instead. Found out it was a blood clot because of the severe bone bruise underneath it. And 2 days later, I found another bruise the size of a dinner plate on the outside of my left boobie under my arm. So I can sympathize with you on your falls…..I hate them too!!! Take care, my friend…..let’s try and stay upright!!!❤❤❤
bethnigro0212@gmail.com
July 7, 2018 11:16 pmOh my god! That’s terrifying and heartbreaking. I’m so so sorry! I’m sending healing vibes your way. But I know too well how a loss like that takes time. A lot of time. I’m so very sorry for your loss. 😢
Positively Alyssa
July 7, 2018 10:56 pmThis was a truly wonderful post! I am incredibly impressed by the strength and courage you display in every post! You are extremely honest, which I appreciate considering it seems so many people lack that in the world we live in. Beth, you inspire me more than you could ever know! Also, I can TOTALLY relate to these hellish temperatures. I live in NC and it has been insanely HOT and HUMID for days now and I do not think it is going to end until October at the earliest. I am so tired of the heat because it completely takes the life out of me. I wish you nothing but the best and know you will achieve any goals you set for yourself because you are just amazing!!!
bethnigro0212@gmail.com
July 7, 2018 11:18 pmAlyssa everyone should have an amazing cheerleader like you in their corner. Seriously. You’re the best. I hope you get some relief from the heat some day too. It’s going to end here very soon, and it will be back to heat and humidity again. Summer sometimes feels so very very long, doesn’t it? ❤️
Positively Alyssa
July 7, 2018 11:21 pmThank you for saying that Beth! You just made my night! I will always be happy to be your cheerleader, you definitely deserve one or more ♡! Yes, summer does feel very long!
Lori
July 8, 2018 12:34 amI live in Minnesota and I feel like there’s always this pressure to enjoy summer, like if you’re not out picnicking or boating or hiking or at a festival you are somehow dishonoring the season. It’s hard to remember that is OK to sit on the couch and watch a movie even when it’s a beautiful day. Sometimes that’s what a person needs. You go do what you need.
bethnigro0212@gmail.com
July 8, 2018 7:28 amI totally get that! I feel the same here in Pittsburgh. We get a lot of gray days so the sun pressure to perform is insane.
Betsy Riley
July 8, 2018 8:54 amI’m still following your blog with interest. You give me inspiration. I’m still a bit confused at the rollerators–to sit down you have to turn around backwards? I’ve been thinking about getting one because my cane is just not cutting it for going more than 10 feet (or sometimes 10 steps). I’m in Maryland and we had the insane heat and humidity, but a real break on Saturday.
bethnigro0212@gmail.com
July 8, 2018 12:00 pmHey Betsy! Yes you turn around and sit facing where you’d usually stand. It’s super handy. Getting to try some out in physical therapy was a great thing because I could see what I liked and what I didn’t. Maybe see if you can get your doc to refer you to PT so you can check out the options and get some help choosing. I resisted physical therapy for a long time but now that I’m going regularly I really see the value. Totally worth it. Let’s hope this nice weather sticks around for a bit now! 🙂
Lauren Fioresi
July 17, 2018 8:51 pmHey Beth. I was wondering how you are doing and if things are somewhat ok on your end. I did write a response to your latest and greatest post but it vanished into thin air. So, since I used all my energy and wit on a lost post, I just gave up. I had nothing to add except I agree and commiserate with all of yous! 😉
I hope you are well, well I know you are suffering with heat and humidity but what I mean to say is that I hope you are still upright and toodling around the best you can.
Lauren Fioresi
bethnigro0212@gmail.com
July 17, 2018 10:20 pmhey Lauren!! Ugh I’m so sorry I missed your original wit! But I’ll take any note from you I can get. I’m hanging in there. I just posted a new blog like three minutes ago! it’s like you read my mind! I have a new toy. I’m both thrilled and horrified by this. I’m sure you can 100% relate to that! LOL I hope you are well too!!