I promised myself when I started this blog that I would never sugarcoat anything. I wouldn’t self-censor, edit or make my story anything other than the raw truth and nothing but the truth but I have to tell you, I had a strong urge not to post this entry, written on Friday night in my personal journal.
I felt pressure to write about my first experience being transported in a chair from point A to point B in a very disability-positive, uplifting perspective but that just wasn’t what got written the other night. When I read what I’d written the next morning, I was almost horrified at my own self. I forget sometimes how low I can go when I let the reality of this whole MS thing get the best of me. I don’t like when it happens. I don’t like the image of myself that comes through – that woman who is spoiled, needy and pathetic. The one who feels sorry for herself. I like to pretend she doesn’t exist but damn if she isn’t persistent.
So I present this personal journal entry in the spirit of honesty. If any of you out there have ever been so thoroughly ashamed of how wrong-headed you can become in the midst of this MS mess, I guess I put this one out there so you know you’re not alone.
I guess I also put this one out there, if I’m really being honest, to remind myself that my own thoughts sometimes lie to me.
Sometimes my own mind tells me to give up on me. I tell me that this is impossible and I should just give up here and quit trying to pretend my way out of this mess. I need reminded of how wrong that is and sometimes the only way to do that is to read over again, later, how I felt in the moment and then I realize that that’s not me talking through that writing.
That’s the disease talking and it has a mind of its own. It’s very rarely right or true. This disease wants to ruin me and I need reminding that it’s there so I never, ever let that happen. It is in this spirit that I will share this personal journal entry that I wrote the other night.
Some times the only way out is through. Didn’t someone famous once say that? (Was it Yoda, cause if it was Yoda I’m really going to laugh out loud, long and loud.) Tell me it was Yoda.
From the personal journal of Bethy-Very-Dark, Friday May 25
It was so much worse than I ever imagined it could be.
Nothing outrageous happened. Not to me anyway. Shawn pushed me and was a dutiful friend. It was hot as fuck and it was no small task. I knew I had no choice but to ask him to push me to the meeting but it literally hurt me to do it so I tried to push it out of my mind. Before the meeting during our pre-meeting rehearsal I sat there and listened to them talk and laugh with all their healthy normalcy. It’s crazy that it felt that way to me! They were just being them. Themselves. Their normal selves with normal lives and normal problems, having normal fun. I sit there and smile along and I want to punch them all at the same time because I can never fit in with them ever again. I can’t relate to their normal-people lives. Not anymore. These are people who do nothing but help me! These random feelings make me feel like a bad person. They’re not feelings good people have.
Nothing went wrong today. Not for me. But it was one of the worst days of my life. Every time I think I’ve hit the bottom, the bottom falls and there’s yet more bottom beneath that. I hated how today felt. I hated everything about it. I hate that hating it made me feel so ungrateful. I hate that hating it makes me feel so wrong. I should recognize how good I have it. I should thank the universe for all of my good fortune. I have so much!
Except for my fucking health. Anyone and everyone in the world who still has their health are people I envy. Being at eye level with others like me in various assistive devices, being on the level with homeless people sitting on the sidewalk with their various signs, I was so low I that I could look into their eyes, having absolutely no control whatsoever over where I was going, how far, how fast. We hit one big bump and had to back up and I was frustrated! Imagine such a thing. Being frustrated that the kind soul who’s pushing your fat ass up and down the streets of downtown Pittsburgh isn’t watching out for potholes in the sidewalk. Imagine such an ungrateful thing!
Imagine that there’s a girl in the meeting, a young mother wearing really pretty high heels, who literally took a header in the meeting room and landed on the ground face first into a credenza and you feel like you had a worse day than that girl. Imagine how ungrateful you’d feel. How graceless. How shameful. Imagine such a thing. She’s not sitting at home right now crying her eyes out. She’s probably laughing about the entire situation and how awful and ridiculous it was.
I want to laugh at how awful and ridiculous my day was too but it wasn’t awful or ridiculous enough for me to feel justified. I mean, on the outside? Shawn did all the work. He got me there. He got me home. It was freaking 90 degrees and humid today and he had to push my fat ass up and down the low grade hill between us and our new business pitch. I didn’t have to do anything but sit there.
I don’t know how to feel ok about any of this. I feel like the end game here is in sight and it’s inevitable. I’m going to have to stop working. I’m going to have to give up being me. The me I used to be. I’m going to have to accept that this is my life now.
But there’s a voice in my head, a very quiet voice whispering, “for now…this is how my life is going to be for now. Maybe not forever. Just for now.”
“For now” has lasted for almost three years now and believing this is going to get anything but even worse just feels like the height of obtuseness. It’s looking me right in the face. I have to try to believe it even when it feels overwhelmingly stupid because once I stop believing it I lose hope. I can’t lose hope. I can’t lose more things and still continue existing.
Every time I think I’ve hit the bottom there’s a new bottom underneath that one. Today was a new low. And a pretty amazing high all at the same time. I mean, I did what I had to do. Shawn got me there and I performed like I always do. I wish I was a big enough person, a mature and wise enough person, to focus on that part of the day. But I’m just not.
Not yet.
Maybe that’s the lesson this disease is trying to teach me. Maybe it’s trying to teach me to think positively. To be a trooper. To not let MS have me! I think this disease underestimated the breadth and bottomless depth of my anger and resentment. I think it’s underestimating those things a whole bunch.
Today sucked. Today was a success. Today was complicated just like life. Just like life with MS.
Maureen
May 27, 2018 10:02 pmI’m sorry that you have been having such a hard time and that you had such a bad day. Some days it’s impossible not to be angry. Really angry. Some days you feel like a stranger in your own life.
Your post reminded me of a day last June. I had to walk back to my office from an important meeting of around 100 people. It was a 95-degree humid day without a cloud in the sky. The kind of day I used to love….
I ducked out of the meeting quickly and hoped I could walk the half mile to my office without seeing anyone. The heat and humidity overtook me very quickly. I was doing a slow, awkward shuffle and was concentrating on my feet so that I wouldn’t fall. All of a sudden I heard a large group of my colleagues coming up behind me. Many of them I considered my friends and had known for 20+ years. As soon as they caught sight of me and saw how much I was struggling they all fell silent. I have never seen these people walk so quickly. They couldn’t get past me fast enough. One of them, who since 1995 has referred to me as ‘the sister he always wanted,’ wouldn’t even look at me. Not a single one of them acknowledged my presence. MS is NOT contagious you know….
Like your day, nothing bad actually happened to me that day. It’s just really hard to keep a smile on your face when you realize that you’re the elephant in the room. Work is hard enough when you’re healthy. It’s SO much harder for us.
MS can make you feel so lonely and alone. I’m sorry you had a day like you had. Thank you for sharing this brutally honest post.
bethnigro0212@gmail.com
May 27, 2018 11:23 pmWow. I can relate to every word you just wrote. That feeling! It’s so freaking vivid. I’ve been on my last leg in public places so many times in the last six months it becomes a bit much. Thank god im generally surrounded by people who would never leave me hanging alone. That’s what I remember when I feel so ungrateful. This disease blows. For real. Thanks for sharing back. Means so much to me! ❤️
Debbi
May 29, 2018 11:02 amGreat post! We’re the elephant in the room… perfect analogy!
Ann
May 28, 2018 9:06 amBless you girl-that helpless & out of it situation had to be awful. And the losses that come with this; I was heartbroken when we had to sell our beloved lake house and future retirement place-the stairs, the country terrain & the climate were no longer for me. Literally took me a good 18 mos to work through that. And the guilt that came with knowing my dear husband lost it too, because of ME. Although its impressive that in spite of all that you are so passionate and accomplished at what you do. Is it possible for you to use a device that will allow you to be as independent as possible? A chair you can self propel or a scooter? Secret here, I’ve been scoping one out, along with the lift it rides on behind my car! I WILL be hell on wheels! I’m pretty sure you would be too. I was lucky to know a local woman who was disabled by cerebral palsy and literally was hell on wheels, and an inspiration to everyone who knew. An accomplished author, speaker & community volunteer. I keep trying to channel that & come up with “workarounds”. Sending hugs and prayers to you honey. Annie (aka “Old & Busted” -I just love that car from Men in Black, so picked that nickname)
bethnigro0212@gmail.com
May 28, 2018 9:11 amGreat thinking, Annie. I was on the same path. Now that I know how much I hated being pushed, maybe it’s time to look into a motorized scooter. I have a connection now with a guy who sells them so I can go try them out and find out which one I’ll be less likely to kill myself on (or others! God forbid). But yeh. I think it’s time to think about that option. Being pushed almost broke my damn heart. Maybe I need to be hell on wheels too. 🙂 also…thank you for such kind words. I never feel impressive. I mostly feel broken. So that is super nice to hear. Thank you for that. ❤️
Positively Alyssa
May 28, 2018 1:49 pmI really love that no matter what you write about you keep things real. Life with MS is definitely not all happiness, butterflies and good days, there is so much bad in between, but we stay strong and fight the brutal battle! There are so many days that I just feel broken and helpless, but always push myself way too far because I do not want to surrender to this illness. I think in so many ways you also never give up and continue to fight no matter how you feel. I can literally ALWAYS relate to every single word you write and feel the same way you do! You are so incredible and I just love how you never sugar coat anything!
bethnigro0212@gmail.com
May 28, 2018 2:29 pmI try not to allow myself to go dark too often. It’s bad for my mental state to have to drag myself out again too often. When I read what I write when I’m in those places, it sometimes actually scares me. But then I remember that it’s the disease talking. That’s why it helps me so much to write it down, get it out, so I can re-read it later and remind myself how wrong I can be when I let it take over. Sounds crazy – but it helps. I’m taking the week off from work just to use up some vacation days and I’m going to focus on working on my MS Gym videos and seeing if I can get myself back to some kind of better mobility. wish me luck! 🙂 I hope you have a fantastic long weekend, Alyssa! Thanks for reading. <3
Positively Alyssa
May 28, 2018 2:54 pmI am so glad you are taking a week off from work, you deserve that time! I hope it is a fantastic week away from work stress!
I am with you 100%, writing helps me get my feelings out of my mind. That is so smart to re-read what we write so we are able to see where we were and try to not go back to that place. You know I always find everything you write incredible! I wish you the best of luck with the MS Gym videos. I have all the faith in the world in you, you will do great!
midgesms
May 28, 2018 7:35 pmI love what you write. I think the rawness & realty strikes a cord as one sits reading this , tears flowing because I relate so well & then anger, uprising., soul crushing Fuck yea!!! I hear you. It was a fucked up day.. yet one again where you poignantly shared with us, allowed us in. Beth, I may not know you at all, but what little I get from your blog, & Insta, I have mad respect for you ❤️
Jennifer
May 28, 2018 11:26 pmRough day. I’m sorry. You aren’t alone. I hope this is is not a permanent situation. I don’t think it’s dumb to hope for things to turn around. Don’t lose hope for better days or the ability to see things different.
bethnigro0212@gmail.com
May 29, 2018 12:57 amGreat advice! I tend to find my way back after hitting a low. Writing about it helps me in some weird way. 🙂
Debbi
May 29, 2018 11:16 amI cried reading this. How many times I feel guilty for the thoughts running through my mind…. Thanks for sharing.❤️ If you sugar coated things, you’d miss addressing the misery in our souls. Knowing I are am not alone makes me less of a monster to myself. All my life I was a positive person. I think I miss that most of all.
bethnigro0212@gmail.com
May 29, 2018 12:18 pmMe too, Debbi. I miss that part too. Now I’m always waiting for the next thing to go wrong. I have to work on that. 😬❤️
Karen Be
May 29, 2018 1:55 pmHi There,
Found your blog by way of Tripping on Air. Your post brought me to tears, because I can relate to your words and can understand where your head is at right now. I’m currently attending a MS pity party of one, and am snapping at and resenting the very people who love me and are there for me ALL the time.
This disease is a monster. Offering hugs if you are open to some from a stranger on the internet. I am looking forward to reading more of your blog, now that I’ve found you. I am always grateful to find a voice who sounds similar to mind. So thank you for sharing your raw emotions right now, it’s helpful to know I am not alone. Hoping today is a better day!
bethnigro0212@gmail.com
May 29, 2018 7:24 pmHey Karen! Tripping on Air is also one of my most favorite blogs. Ardra has way about her and her writing style that hooked me from the start. I was searching for a voice that felt authentic and true when talking about this horrible disease. She inspired me to start making my own writing public, to tell my own MS story in my own painfully honest words. I accept hugs from all places – especially since this blog has led to strangers on the internet actually becoming my real life friends, friends I really value. So thank you for that hug! I talked to my therapist today and spilled my guts about my own pity party of one and she helped (like she always does) but I’d be a liar if I said the party hasn’t become a four-day long weekend binge. Gotta somehow nip it. I’m just not there quite yet. You are SO not alone. I think the real-life pity party would require a stadium maybe, or some kind of village set up like Coachella – something really big to accommodate the number of us out here, struggling with this shit disease and feeling totally alone. Realizing we are not alone is the whole reason to do this at all. Thanks for your comment and your hug!! <3
trippingthroughtreacle
May 30, 2018 3:16 amJust wanted to let you know that you aren’t alone – you put into words how I feel all the time. MS is a bitch, and helps me to read something so relatable. Sending you massive hugs, really hope that you’re feeling a bit better and that today is a bit more manageable 💕
bethnigro0212@gmail.com
May 30, 2018 10:23 amThank you so much for your comment. It definitely helps to know others are in this shitty boat with me even though i wish none of us were. Its super hot here where i live so I’m having a hiding from the heat party here in bed until I have to go to my first physical therapy appointment later this afternoon. It’s the one thing i haven’t tried yet! Here’s hoping it helps. ❤️👍🏻
trippingthroughtreacle
May 31, 2018 4:35 amReally hoping the physio helps! Heat is a bugger, luckily it doesn’t usually get too bad here in the Uk. I used to love it! 💕
bethnigro0212@gmail.com
May 31, 2018 6:55 amWe’ve had a horrible heat way super early in the season these past few days. I’m watching the weather maniacally waiting to see something in the 70’s instead of the 90’s some time soon. The one time I visited the UK on holiday there was a heat wave. I about died realizing that lots of places in London didn’t even have air conditioning! I melted all over that beautiful city. Haha ❤️
Sandra Schneider
June 3, 2018 7:09 pmThis disease keeps pulling your legs out from under you. I’ve had it 33 years. The first 20 were RRMS, with a 15 year full remission in there. And then, when I turned 40, the progression hit hard and fast. It’s been downhill since and I am pretty much bedridden, though I can get a few steps to the bathroom. The only advice I can say is that you must forgive yourself. There is no right or wrong way to get through this. Those people who say a positive attitude is important are absolutely wrong. Everyone needs their own, real authentic attitude, no matter what it is, to get through this disease.
bethnigro0212@gmail.com
June 3, 2018 7:46 pmI tend to agree with you, Sandra. There is no one way through this mess. I’m so sorry to hear that you’ve gone downhill. It’s the worst. I’m still so new to this, I’m waiting on my first real remission (and suspicious that I may not actually get one). I’m sending good vibes your way. Maybe another remission could be in your future! I hope there is. ❤️
Sandra Schneider
June 3, 2018 9:41 pmThanks. I’m SPMS for 12 years. No more attacks or remissions. I’m cultivating acceptance, which is getting easier, and trying to be present every moment, but the lack of mobility is frustrating. Mostly, I can’t accept not be involved in my kid’s lives.
bethnigro0212@gmail.com
June 3, 2018 11:05 pmI can imagine how hard that must be. Acceptance is hard to come by. This disease is such an ever changing tease! But i wish you well on the path toward acceptance. I hope to get there some day myself.
coolncreative17
August 1, 2018 5:05 amI am an artist too so I loved seeing how you potrayed your feelings of living with MS in an artwork
bethnigro0212@gmail.com
August 1, 2018 9:26 amThat’s awesome…I’d love to see some of your work. Do you have a website I could check out? I hope you’re well. 🙂
coolncreative17
August 2, 2018 4:57 amThanks for commenting. My blog is coolncreative.wordpress.com so you can follow me there and I will keep you updated with my art website once it’s up and running.