Well yall, I made it.
I made it to Washington DC for our big advocacy day on the hill tomorrow. I made it through the last 6 weeks which were all kinds of difficult for all kinds of reasons. I made out with a guy, like high school style. Life is crazy! But I made it.
I will get into the last six weeks another time, but it feels more important to document what’s happening now– which is that a sick little Gelpi made her way to D.C. to play with the big boys. I can barely keep my eyes open writing this, but I’m ready. Anything, everything– I am finally where the magic happens and I know I need to make this a high impact and memorable trip–for them, not me.
Tomorrow is a big day. I can’t believe I’m in D.C. If you would’ve caught a glimpse of what was happening two hours before my flight was set to go, all odds would fall in favor of “Yeah there’s no way she’s making that flight.” Long story–another time. But here I am. And the process of arriving was not made any easier by my body, that reliable piece of shiznit, which fought me pretty hard the whole time I tried to make this happen. There was serious contemplation on backing out, and considering I bought the ticket to come here yesterday, this all happened fast, and felt like it could unravel just as quickly. But I knew, the way you seldom but with pure certainty know you have to do something– even if you don’t know exactly what that thing is, you just know you need to be there. Show up. Something in me knew I needed to show up — even if it resulted in nothing tangible or in “successful Numbers.” I needed to see and talk to our politicians as the humans they are and not the dopes I see portrayed on tv. It’s easy to lose faith in our system, especially given the media coverage of Washington and the shitshow that it is. But I need to believe in all of this, because I know deep down there are actually good people out there– out here– working really hard to make things happen. These are the people we need on our team.
Despite Social media bringing public figures “closer” to us, and in some ways more accessible, there’s still a disconnect that just can’t be filled in except for that good ol fashioned thing known as actually talking to someone. I think I’m all tweeted out, as far as tweeting at strangers asking them to care about something they mostly don’t care about is concerned. So it’s already somewhat of a victory: just being in the battlefield, and seeing the whole system at work. Double checking they aren’t robots– that kind of stuff.
Getting here was a last minute near disaster. I was that last person jerkoff to board the airplane, out of breath from running. Then …I apologetically made the entire airplane smell like bengay because it was the only thing helping with my head and face pain which have been on fire all day. After the second application and an onslaught of coughing from a few rows back, I was nearly certain that this sort of coughing hadn’t occurred prior to Ben Ben time, so I knew I had to slow my roll. That stuff can be intense. Anyway, here I am. So tired and heavy I could collapse. And I did. I did that thing where you open the door and drop all of your things and small items like lipstick and pens go rolling out of your purse and you just lay there in a hard, thudded silence, face down in a bath of white linen. Also, the fact that it was a big king sized bed, which is totally unnecessary for me but awaiting my laying in it, made it feel all so luxurious.
I’m still in that phase where hotels are a novelty and every part of them is fun. I imagine this is how flying on airplanes started out for most of us. But now it’s like this exhaustive, painstaking process. Gotta work on that. Anyway I was almost too tired to put on Jammie’s. But I did of course; I’m not an animal.
You just have to love hotel room culture, right? I just called the front desk and requested a wake up call. They said it was their pleasure. How nice are they! The cab driver asked me why I was here as we zipped around new territory and I took it all in through the backseat windows– beautiful place from what I could see. I decided to go for it, figured I need the practice anyway and the world needs to know. I said I was here to advocate for disease awareness and funding because it not only costs the country billions of dollars every year, it causes immeasurable suffering to millions around the world and right here in the US of A. After thirty years of inaction, its just time to make it right, ya know? (He didn’t say anything, but I went on. He at least pretended to listen) It’s been ignored and desperately needs adequate funding for research so we can treat and eventually cure it. And that’s basically it. There was a pause, then the rhythmic click of his blinker and a lane change, and another small pause.
“I pray for you. All of you who sick and all of you fighting!”
I wanted to hug him right then, but restrained myself and told him I really appreciated that, and I really did. We would take all we could get, I told him. And he said he’d pray hard. When he dropped me at the hotel, he told the bellhop “Hey! You take care of this young lady!!” The dude smiled and said “got it.” It all feels like some Netflix tv drama. Hard to explain. But really, really good to be here. It feels right.
It’s a long time coming having the chance to converse with people face to face, not through 140 word count snarky tweets with every kind of hashtag. I want to meet people involved in the system, shake their hand and look them in the eye. It will be nice to offer a name and a face with the disease, and tell the stories of people who are in desperate need but have been ignored for decades. For months I’ve craved a tactical human interaction where I could explore this subject, a connection where I could share the multitude of issues and see a reaction within another human being. And maybe, just maybe, we actually start achieving the solutions– which are just lying in wait for us, like some leftover suit at the dry cleaner. We don’t even have to brainstorm the solution, we know it! We just have to convince them we’re worth it.
I’ve longed to tell our stories out loud, beyond online. I am exhausted of twitter, I get down about Facebook, and clearly, I even abandoned this space a while. That’s another story. But the point is, Boots are on the ground, I’m ready to rumble and do what lobbyists do and talk about the multifaceted issues around mecfs preceded about talk of the weather and how crazy it must be to work in politics right now! (Cause like seriously, it must be crazy)
ORRRRRRRRRR I just lay down on the steps of the NIH all day because I’m too “malaised” to move.
The questions is, I think most personally for me, is WHAT ARE WE WAITING FOR? We know better now, so we should do better. Oh shit, it’s 2 am. But I’m not worried, I got that wake up call all worked out.
In my mind I’m here for a simple reason–to help remind policy makers that this disease and those sick with it aren’t going anywhere. This will only get bigger, it will only get worse. The cost will become outrageous. Our options are basically zero in finding and treating this properly, so we’re leaving our fellow Americans in the dirt. Like my Uncle Tom says: “That don’t be right.” There are so many things that need addressing and fixing, and if I consider them all I become easily defeated. But all of this has been a meditation in simply doing one thing at a time and doing it well. Doing exactly what’s in front of you.
So that’s how I’ll go about this trip. As clueless as I am, I trust in something deeper that helped bring me here, and I believe fully that we CAN fix this. We CAN do better. It’s just time to.. you know, pick up the pace. We’ve been in line at the DMV for thirty years– I think it’s time our number was called.
Will keep yall posted. Thank you for…..everything.
Health, Happiness, Battleground
FibroM.E.-Awesome 
I found your blog today. I read a couple pieces and enjoyed them. I’ve had CFS and Fibro for over 30 years, it started in my late 20’s. I now have RA. I’m single and worked full time for 36 years. I can’t work now and money is very tight.
I read Robyn’s comments. I feel a lot like she does.
One minute I dream the next I ask myself why I’m wasting my time because I need accept that I’m never going to get better. It’s a hard road for all who have this illness. Blessings to you and keep up the good fight.
Sharon
LikeLike
The hope alive! Hah sorry, got caught off. Anyway, that’s all. Much much love, health, and happiness,
Mary
LikeLike
Mary sweetie, what kind words you had for this old lady! Life with a chronic illness is a real bitch, especially since it takes on so many different forms, in so many different ways, on so many different days. I have become very recluse since having to cancel on so many plans is just too dang frustrating, embarrassing and makes me hate myself for being so “weak”. It is just easier and less stressful to just stay home. But I have lived most of my life and so, for me, this isn’t such a downer. I always wanted a small, funky, artsy-fartsy shop of my own and now when I finally can have it, I find that I just can’t muster up the energy or ambition to get it open and running and I feel like I have finally lost my last “hope” and I am really torn between sadness and relief. Relief in the fact of finally coming to grips with “this is now my life, not the life I had hoped for but the life I have, and I need to find happiness and fulfillment in this life of uncertainty and to be okay with it and to not see myself as a huge failure since I have no control over this illness that I DID NOT choose to have.” If I can still do small things for others and create beauty even if just for myself and bless the socks off of everyone who walks into my home ( and not care if the place looks like it has been vandalized) then my life is still worth living. Now to just be able to release all the stuff I have accumulated over the years in anticipation of my little shop….that is really the hardest part….the actually letting go of the stuff since that will cement my realization of the end of my “dream”. I need to fashion myself some outlandish “rose-colored, BE GRATEFUL for what you still have” big girl panties to pull up over my Depends (LOL) and throw myself one hell of a pity party and then move on. I will keep you posted as to how it goes!
LikeLike
Robyn,
Felt compelled to respond to you about a few things. First is that, if the possibility of opening the artsy fartsy funky shop is holding you back in some way, or hindering your life in any way, then maybe OK, it could be time to let go. But I couldn’t help noticing as I read your words that was there no need for you to give up the idea of owning and opening that shop one day. I know “one day” can sound far away and unattainable, but we’re getting close Robyn, in every facet of this illness, and the possibility is real that you could get better, and you could do things without the pain and burden of this illness stopping you. No matter what phase of life you’re in, were meant I think to follow that thing– the one telling you to open a funky artsy shop that maybe you can’t totally explain– were meant to listen to it, and the brace go after it, and I think they’re rewarded. Even if say the funky shop we’re to fail or burn down (total hypothetical, just talking here) but even if that were the case, it would’ve been a success, because you’d have actually gone after something straight from your inner self, and that’s the hokie pokie baby! (What it’s all about, I mean) I just hope that you’re being kind to yourself, and with disease it’s very easy to enter to the territory of “I’m weak, im just not motivated enough, not strong enough, smart enough.. enter self-negative talk here) But you have to remember, and everyone with this disease does, that we are full time fighting a battle. Every day, every minute, some part of us is at war– and that’s only the physiological part. Forget losing friends and a social life and the “belief” of people you cared about and loved. There are many depths of pain to go through with a disease like this, and I’m sure you’ve experienced many– my mom is also mostly a recluse. The thought of socializing is more an exhaustive chore than anything (even though she LOves When she actually does see people) but she’s had to cancel so many times, crashed so many time just for attending things, that she mostly hangs indoors. I get it.. I’m younger and I guess a part of me is holding on to the idea that I can be sick and still have some sort of normal social life (NOPE!) but I can at least keep participating, bc if I gave up all together, well just shoot me like a horse! Jk. But you know what I mean. Anyway the point in all this is that I want you to remember you’re working another full time job right now, which is staying alive and managing the war inside you. Outside of that, who can do anything, particularly run a business? Imagine if you had cancer… your friends and family would gather around you and tell you how brace you are for at least trying or at least hanging on to the hope that you will be well again, and when you do, that’s when you’ll open the shop. If you need to train someone after you die, I’m in. Where do you live again? Kidding, sorrtof. But I’m sure you’d find some funky kid who could take over after you and live out the rest of yor days doing what YOU wanted and what you had always hoped you’d get the chance to do. I guess I’m just saying, in this novel, please don’t lose hope that getting better is possible– for you and me and my mom and 2 million others. Not in the (I’ve heard magnesium helps!) kind of way— but in the way of an actual cure because of real studies that examine the physiology of this monster, and stay far away from the phsychologocal component, which is toast, even if a lot of knuckle head psychiatrists are hanging on to it. (That’s their own issue, that THEYLL need to let go of). But i say, if it’s not hurting anybody, if it’s not costing you money you desperately need, hang on to those things that may end up on a funky shop shelf one day. Because we’re making things happen funding wise, and once that’s there, we’ve got brilliant docs and researchers just waiting to complete their work, and all of it is promising. SO, in conclusion, don’t lose hope, because if you do I will, and I need people like us to keep putting their energy into the truth that we will win this fight, and that it will happen sooner than later. OK? We all clear young lady? :) were in a new age. 70 is the new 50. Imagine if you woke up and felt great, energetic, pain free, clear headed– imagine what you could do then? A lot, I think. I can pick up on your passion just from your words. So no more negative self talk– try to keep believing that things are going to change in a monumental way (and they are, I promise. Don’t know how I know that, I just know that) And I think our actual belief in it, that modest thing called hope, actually contributes to the momentum and the actuality of all it happening. And it will happen Robyn, it will! So do whatever you must and whatever is healthiest for you– but don’t give up on actually living out some part of this stage in life healthy and well and strong– because it’s possible, and we need your souls belief to contribute to the movement! :) I just know that things like that, without an iota of knwkledge how it all works, really matter and make a difference. So keep the hoe
LikeLiked by 1 person
Mary, are you sure you are just in your early 30’s…you have too much wisedom for one so young! You are the Yoda of Planet Fibro (I am not a Star Wars fan so I am not exactly sure what Yoda is except I know he was wise! I relate more to Jabba the Hut).
Your words made me tear up. I forget that 62 really isn’t “old”. (My mom is 85 and looks 20 years younger and acts 50 years younger. The woman is a social butterfly and a dynamo and still lives in the same two story tiny house I grew up in and drives herself everywhere. Nothing stops her.) I had my hubs read our missives and we had a great talk last night about what he expects from me if I do take the risk of living my dream. We already rent the space and he has done 90% of getting it ready for me and because it is next to our own business property, he will be adding some of his business products there as a “showroom” as most of his business production is geared toward wholesale manufacturing (sleds, toboggans, snowshoes, unique cabin-type furniture and indoor wooden shutters to name the biggest sellers…all hand made by him and five other employees) so it will be nice for him to have me there so if someone wants to see what he does, he can send them over. He said if I wanted to do nothing but make my art there, that would be ok with him. And just getting that reassurance, that I don’t have to do anything more than what I love, has freed me from my mental bondage (along with your last reply.) Gee, maybe I CAN do this. Maybe just stepping up to the plate and holding the bat and swinging at whatever comes my way and not worrying about hitting it out of the park is enough for now. I have had three long, long, long years of “re-tired-ment” where everyday has been a struggle to find a reason to get out of bed and most days just barely hanging on by my fingernails. Having no purpose in your life, no joy, nothing to look forward to, or plan for is like being stuck in a gray vacuum. “Nothingness” surrounds you like a thick, pea soup fog that you can’t see your way out of but you are incapable of doing anything about it. I suppose it is hopelessness. I think I fight that the way others fight addictions. Oh man, I could go on and on but I bet every person who fights our fight feels that way at sometime or another. I really never hoped that I would get “cured” in my lifetime because I did not know that the medical community even believed we have a REAL illness but you, little one, have shown me that there are others out there that care about finding a cure. I just pray the pharmaceutical companies don’t get their greedy hands on it or we will never be cured only drugged up and at a premium price.
So Miss Mary, I am going to attempt to live out my dream, thanks to you and your wise words and total belief that I can do this, and if you are ever in northern Minnesota, you must stop by and we will create something beautiful for you to bring home. Thank you from the bottom of my butt (it’s soooo much bigger than my ❤️) for taking the time and energy to encourage me. If I can do this, it will be in no small part, because of you!!! Give your momma a “high five” from me for raising such an awesome daughter. I will keep you posted on how it goes!!!!
LikeLike
Go Mary is right! You are my heroine! Seriously. I like how you describe perfectly how I feel every day. I’m a Tiger Balm — or Tiger Bomb — junky most days, so I was like: “Fist bump!” Thank you for taking on DC for all of us and praying for your safe travels and for your comfort. I was just telling a lady I think of as my mentor that there’s not a pain-free day for me either when she shared the story of someone else who has fibro like us. Thank you just seems so small to say because I know this is a Goliath. You go, girl! Enjoy that hotel. (I too love hotels and every neat thing about them…especially room service.)
LikeLiked by 1 person
Thank you so much for the support and encouragement Susan, it means a lot to me to know my words are bouncing off anyone and resonating somewhere :) I’ve recently switched to biofreeze.. pretty good stuff, I only wish it lasted it longer. My head and face pain are a total disaster, I don’t know what to do for it– they recently did a “nerve block” procedure to numb an entire nerve on half my head.. but still here I am feeling like my brain is swollen and pushing on my skull.. that’s the only way I know how to describe it. Pain meds, ice, bio-freeze.. basically my regimen, but it’s not really effective and I just still don’t know what the answer is. (Join the club, I know) anyway, not sure why I went off on that little tangent, but now you know about my weird head/face pain! What a mess. Anyway, thank you for reading, for writing, and taking the time to reach out. It really does encourage me to keep on keepin on, so that’s what we’ll all do, until we don’t have to anymore :) Hope to see you back here, hang in there!
Mary
LikeLike
Oh my dear Mary, I cannot tell you how I laughed and cried through this post! It means so much to those of us who cannot go to have somebody like you representing us all. Huge virtual hugs! Go get ’em!
LikeLiked by 2 people
Aww thank you Jule! I know if yall were able to, you’d fight for this too. We’re all in it together, and we’re gonna get there! I know it. Thank you for the love and encouragement. Hang tough out there :)
LikeLiked by 1 person
I hope someone went with you. You look so young and so worn out. My momma’s heart hurts to see you like this….so brave, little one. Never believe for one instant you do not have a purpose in this world. You are our Warrior Woman and I admire the crap out of you (and your momma for not coddling you or holding you back….I am way too much of a helicopter mom and my 35 year old daughter keeps trying to shoot me out of her sky!!!!).
I am glad you got to be young and carefree for a moment and making out like a teen sounds so fun…(it’s been decades since I have made out with my hubs….that Elvis has left the building!!!)
Thank you, thank you, thank you, for being our voice in Washington. How someone could look at your beautiful young face and not throw money at you to help you, would be beyond belief.
Rock on, little one, Rock on!!!
LikeLiked by 2 people
Aw thank you so much for your words queen Robyn, I feel like we need to hug after reading what you wrote! I can’t tell you how much it means to me to have the support and encouragement from basic strangers– but somehow through our experience we have an instant closeness, because we KNOW a certain something about life, due to illness or injury or whatever is throwing us off the path, and that familiarity and knowing something that even those close to us but are still on be outside of our experience, just can’t quite know. Not because they don’t care or don’t want to, but because this disease is just so damn weird and thick with baggage, you really just can’t know until you KNOW. Am I making sense? Because I just made myself dizzy, jeesh. But you’re very intuitive because you were right, it felt good to do this on my own, an aspect of independent I was able to take back. And you’re also right, I think my mom was nervous that I went alone, but also trusted that it was right. I’m a pretty big baby, so if im not able to handle it, I’m not gonna go, if ya catch my drift. Something just told me I needed to be there, and I’m very glad and grateful I was able to pull it off. I wish all of us could meet in person like that, because the fellowship aspect of this “movement” was so much bigger, such a stronger force when you’re actually talking to someone face to face. (Duh) But we’ll all just have to take turns fighting, and any little thing we do, literally just encouraging someone else (like your words) contributes to the whole shebang. So be proud of yourself too– cause this stuff ain’t easy, but being each other’s cheerleaders is huge, and something I realized the real importance of when I went and met actual people/advocates/patients in person. So I hope we can achieve a larger sense of that in the coming days of fighting our fight, whether it’s from our living rooms or in congressional offices. OK, tired, thank you again for reaching out and for your encouragement, it really does mean a lot to me and helps keep me goin ;) keep on keepin on.
Mary
LikeLiked by 1 person
This is impressive. Go Mary. Not an easy undertaking by any means and dealing with DC even more daunting. Blessings, healing and energetic thoughts to you.
LikeLiked by 2 people
Thank you Wanda. It was great to go, not just to meet decision makers but to connect with other advocates/patients. So grateful i was able to do it! Thank you so much for your continued support and encouragement, it truly means a lot to me, and I can thank you enough for all yall have done. This is Wanda Hicks right? Haha, ya never know. Thank you for reading and writing… hope to see y’all soon!! Much love,
Mary
LikeLike