in which there is an announcement, and everything is terrible

My heart.

My heart.

So if you haven’t seen it yet, I made a pretty enormous announcement over on the shop blog. Some of you don’t even know there is a shop blog, so hey, it’s cool if you didn’t know.

Bodies suck, folks. 

Right. Right: I’m still kind of stuck on that last sentence: bodies suck. Bodies suck, bodies suck, bodies suck suck suck suck suck, goddamnit, I knew this would be hard, so hard, and even still: oh, to hell with this forever. As hard as I try, as much as I want to be kind and forgiving to this body, as much as I want it to be about this disease and not this body, I am so full of rage and loathing today. 

Today I admitted there was a thing I could not do because of my disease.

That’s not exactly true, because in actuality I admitted that a few weeks back, when we started Doing All Of The Things: this is a process, of course. Today I just started telling the world at large. It was actually harder to tell a few close friends, studio people, industry folks & family. 

I hate this. 

About a year ago- almost on the dot- I changed out my primary disease modifying medication from Copaxone to Gilenya in the hope that I might feel better overall and cut out my annual relapses. (I was also totally over shots, no lie.) I managed to avoid my annual relapse, but I didn’t get any better, which was disappointing. I had thought, last summer, that I had maybe another two years of dyeing in me, at most, so we began trying to adjust things in the business; moving to a more wholesale- based model and leaning more toward teaching. By early winter, though, it was becoming pretty clear that I wasn’t going to get that much time. 

I don’t know. I hunted down every option I could: I soft- fired my neuro, switched up a metric ton of meds, took on two different physical therapists, got in with the pain clinic (and god, I’ve been afraid of that forever), met with a bunch of new doctors, all trying to scare up some magical… something that would make my work possible. It seemed everyone I met with asked me the same set of questions, though. 

“Are you still working?”

Well, yeah.

“Full time?”

Of course.

“What do you do?”

And then I’d explain it to them, because almost no one does this work, and they’d look horrified, and we’d discuss Uhthoff’s Phenomenon, as though I didn’t know what that was, as though I hadn’t known what it was since I was diagnosed, which, incidentally, was right after I’d decided to open a business as a dyer. Because you know, life is funny that way. 

I was holding out, really, on meeting with my new neuro at the Hopkins MS Center. Surely they’d have my magical miracle. If there was pixie dust to be found, some sort of sciencey- wish- come- true potion, they’d have it, a combination of physical therapy, diet, drugs and mindset that could make this body just up and Do The Damn Thing, already. 

I spent about twenty minutes sobbing in my car after that appointment, obviously. It was over. 

———————————-

I grew up in a blue- collar family in New England. We saw the doctor once a year, unless one of us did something awful to ourselves, because doctors are expensive and there were four kids in our family. If we got a cold, or were otherwise unwell, my mother used a home remedy on us, or we were told to suck it up and move on. Rub some dirt in it, that sort of thing. This is pretty typical for folks who grew up in my socio- economic set: my husband grew up the same way, as did many of my friends at the time. I don’t subscribe to that theory these days, but I’ve also lucked into really, really good health insurance. That’s how it was, and given the circumstances? It made sense. 

I was the oldest, so I was also free labor a lot of the time. That’s also pretty normal for the oldest kid— Oldest Kids, chime in with me here: I’m not alone on this, right? I remember cutting back rosebushes, helping with the garden, painting fences, that sort of thing. You just help out, because you’re the biggest and you have the strongest back. 

Here’s the thing, though, about being broke and being free labor: sometimes, you felt like crap and you had to do things. Hard things. There wasn’t any option. Sometimes, your folks had just taken on this new place they were renting and it needed all this work before they could move in and you and your step- dad really needed to sand the floors and paint stuff and whatever and if you felt like hammered hell? Too bad, so sad. There wasn’t any money for a doctor and stuff just had to get done, so you just did it, and it got done. You had already learned not to even ask for a doctor. You just got up and did the thing. Broke folks all over the country are doing things like this- and a lot harder- every day.

When I was out in the world, I joined the service, and that’s a bit of a trip, too. If you’re in the military, there’s an assumption that if you’re in and you’re not on a pregnancy profile or 2 years away from retirement then you’re either perfectly capable to do any physical task assigned to you— you got into the service, after all!— or you must just not have enough drive to accomplish the task. Now, maybe it was a personal goal, like running a 5k; that’s a personal failing. No big, you’re just lazy. If it’s a professional goal, though, like meeting physical fitness standards, you’re a giant screw- up and it can impact your career; people would blow out knees over that sort of thing, sometimes because they came from backgrounds like mine. 

Between those two spaces, I picked up this idea that really, I could push this body to do just about anything I wanted it to if I only had enough desire, enough drive, enough want. I just needed determination and discipline; anything less was a personal failure. In actuality, it’s shocking what I have been able to bully this body into doing; equally shocking, of course, is the toll it has taken. I am falling apart, coming loose at the seams, and no one on my medical team is at all surprised, which is of course embarrassing as hell. I am not, it turns out, capable of bullying myself into submission forever. My body has turned on me, rebellious and angry; fair, as I’m angry at it for not playing the game I’d wanted, too. Are we at war now? I think it’ll win, which means no, not a war, or more accurately: perhaps we’ve been at war for years, I just didn’t consciously admit it, and now I’m waving the white flag. 

I’ve been bullishly pushing for so long, too long, and I need to stop. I don’t have much of a choice, which… hell. There is that. I don’t know what to do with that. I’ll just live with it, because it is unavoidable. 

———————————-

I don’t know what comes next. I have a plan, a small one, because I can’t seem to get my head too far around a life that doesn’t include this space, these people. I won’t be leaving the life (I think of it as The Life, for crying out loud): I’ll be doing some work for Cooperative Press, which is lovely, and bless them forever for taking me in. I’ll be writing patterns, too, of course. Just plain writing, I think: I see a lot of that. Narration, that’s in my future; I’ve done some commercials, a few small audiobooks, one so OMG terri-bad that I don’t even want to talk about it (except I kind of do, it’s hilarious and I’m really enjoying the superawful ones) and I’m in the middle of one now that’s pretty alright. That work is not only enjoyable but seems so funny to me after years of jokes from friends: “Sarah, do you know what you should do?”  Yeah, well- Jason, I’m doing it now. Meditation is probably an avenue for me, I think; I’m trained, and after over 20 years, I know a little about that, too. 

Rest, though, first. It’s a strange idea. I don’t know how to do that; I’ve never been any good at it. Even in the middle of relapses, Sam’s always needed to hide my laptop and devices from me; I am not good at not working. I want to create a Plan For How To Rest, that’s where I am with the idea of resting. I want a limitation on how long I rest, too; I’ve written my neuro, He Of The Diet Mountain Dew, to ask him how long of a recovery period he thinks I really, actually, seriously need. I am actually that idiotic, you guys. Here’s hoping I’ve learned a little, and can do better. 

Tonight, I’m going to curl up on my couch with my tiny dog, my giant dog, some tea, a giant piece of chocolate cake and my laptop and scroll through pictures of the last 2.5 years in the studio. Oh, we built a really amazing thing. I’m just not ready to stop being in this place, doing this thing with these people every damn day. I know it’s killing me and some days I just don’t care: I love it so damned much. I am going to miss this with every bit of my broken heart. 

  One thought on “in which there is an announcement, and everything is terrible

  1. Jan
    July 15, 2014 at 11:24 am

    Love, health, healing and hope for all beings who are sick, sad or suffering.

    That is my wish for you.

    Jan

  2. rockandpurl
    July 15, 2014 at 11:26 am

    I am sure I speak for many when I say, we love you. We love your yarns but we love a happy Sarah more. Take care.

  3. July 15, 2014 at 11:36 am

    I am so, so sorry. I don’t have any comforting platitudes for you, and I’m terribly sad because I’ve been a fan of yours for years. It is horrible when something that is emotionally good for you isn’t physically good for you. I bought one precious skein of Skinny Bugga! and it is going to be a special shawl that I will treasure forever. I know how it feels to keep going after you actually can’t anymore. It’s how I was raised, and I’m glad that you’re giving your body the rest it needs. There will be other endeavors, other adventures, and this changes nothing about who you are (even though it might feel that way.) Sending you virtual hugs and cookies ❤

  4. Nancye
    July 15, 2014 at 11:51 am

    Sending light and love and hugs. You are in my heart.

  5. July 15, 2014 at 11:54 am

    I know about not being able to the job ones loves.I know it takes time to get used to this fact.I still dream about my job & it has been 20 years.
    I have a neuro disease. I take Co enzyme Q10, an enzyme that we lose in our thirties. The CO Q10 is found in stores like Trader Joe’s, Whole Foods,HSN. I think it helps me a lot.I have been taking it for years.It builds new cells in the body, mostly the heart & brain.
    Just a bit of information you may be able to use.I told my doctors I use it.Some neurologists use it for Parkinson’s & more. I wish you the best.I love your yarns.

  6. July 15, 2014 at 11:55 am

    Sarah, my heart bleeds for you. I’m still able to work a few hours a week at what I love because of my Super Hero Husband. Having to quit completely, well, I don’t want to think about it. I might have to at some point but today is not that day.

    I have so much I have written here and deleted and written again and deleted. There really are no good words.

    I hope you continue this blog. I admire and am inspired by you. Your journey and how open you are about is very helpful. Thank you for sharing what must be horribly difficult for you. I know if anyone can change, grow, learn and teach, it’s you.

  7. July 15, 2014 at 12:36 pm

    I’m so sorry to read this. I can’t imagine what you’re going through right now. I know you’ll be great at whatever you take on next and you’ll find a way to be active and awesome, even as you have to spend more of your full time life managing your condition. MS sucks. I hope there’s a cure in our lifetime and you can get back to work.

  8. Barbara Beohmer
    July 15, 2014 at 1:01 pm

    So many platitudes – it’s a fight and all you can do is keep on fighting – one day at a time. Your mind is your biggest strength

  9. July 15, 2014 at 1:07 pm

    Oh Sarah, I am so so sorry. You have built something amazing that so many people treasure every day. Not everyone gets to say that. And while it kills me to think that your beautiful yarns could have contributed to a decline in your health, I hope you are able to feel good about all that you HAVE accomplished and feel excited about the different paths your life may lead you down after you rest, recover, and focus on self-care. Things aren’t all over. There are many ways to remain involved in The Life and I hope you still remain a presence on this blog and on Ravelry as your health allows. Please, take care of yourself. ❤

  10. Joan Forgione
    July 15, 2014 at 1:19 pm

    I’m sad that you won’t be doing what you want to do and sad that you don’t feel well. I’m sorry, too, that I won’t have Cephalopod Yarns.

    You’re so talented, Sarah. I know there’s good things ahead for you, both professionally and personally. I wish you all the best. Take care of yourself!

  11. Patrick, or fionnmccueil
    July 15, 2014 at 1:44 pm

    Great artists need great challenges, but this…

    I marvel at what you may rise to create next.

    But rest first. Every great artist, and every great warrior, must rest every so often.

    Love to you, Sarah, and to Sam.

  12. Patrick, or fionnmccueil
    July 15, 2014 at 1:46 pm

    (I should say Patrick, also MrKnitterotica…) But love to you, great lady.

  13. July 15, 2014 at 1:59 pm

    You are among the bravest people I know. Loads of love. ❤

  14. July 15, 2014 at 2:04 pm

    I am so sorry. We don’t know each other (we met once, I think, at a CP party at Rhinebeck a couple of years ago — I kept dropping my food on the floor — and I was way too fan girl to say anything to you), but I have loved your yarns for a very long time. I have no doubt that whatever you choose to do next will be just as filled with beauty and awesomeness (even if it’s something you’re doing just for yourself). Take care of yourself. Be good to yourself.

  15. sumik
    July 15, 2014 at 2:42 pm

    I am sorry to hear this news. You do lovely work and will be missed as a dyer.; I am sure that your creativity will blossom wherever your journey takes you next.

  16. Brandi Brittain
    July 15, 2014 at 2:52 pm

    I was telling my friends about you and Sam the other day and how we would sit on your porch on Dodd ct and talk for hours about what was and what will be of our lives after the military…you did just what you told me you were going to do that is so huge and inspiring….I have huge tears in my eyes and a heavy heart for you but I am so happy you were able to talk your bull headed self into giving your body a break and healing. Maybe you can teach someone like an apprentice to take over for you that way you can watch it and still be a part of it. I am sending you much love and healing thoughts.

  17. July 15, 2014 at 2:54 pm

    Oh, I understand. I didn’t realize. Gentle hugs.

  18. July 15, 2014 at 3:47 pm

    Words? Millions and yet none that can fix a broken body or relieve the pain. Sad thinking we have money for war, but not for “Health” care. You are a doer maybe should become the thinker/planner/teacher. Find apprentices to learn, they will continue and expand upon your work. That’s the greatest gift you can give yourself and your fans. For now rest. Formulate, plan, write a map for those to follow in your footsteps when you have the mental fortitude to do it. You cannot take care of anyone if you don’t take care of yourself. But let the anger go. We are human and fragile. Be grateful for the good days, rest on the others. Hugs and prayers!

  19. July 15, 2014 at 4:04 pm

    Best of luck Sarah! You and your yarns are a source of inspiration to us all! 🙂

  20. July 15, 2014 at 4:28 pm

    I am so sorry to hear this – be good to yourself and think of all the beauty you have shared!

  21. Elaine
    July 15, 2014 at 4:49 pm

    I’m so sorry to hear the MS has impacted you so severely. I’ve bought a little of your yarn and wished I could afford more. You will be sorely missed by the Balto/DC knitting community. In case you haven’t seen it, has anyone mentioned low-dose naltrexone to you? It didn’t do much for my own autoimmunity but it’s very unlikely to cause adverse effects and works wonders or some people. Good luck, and I hope some rest gives you some relief from your symptoms.

  22. July 15, 2014 at 6:27 pm

    So much love for you, truly. I don’t even know what to say. (The husbeast has seen his life dwindle from complete independence to being bed-bound, so it’s safe to say that I have a general idea of the magnitude of craptasticness today must have been for you.) If I had a teleporter (Delaware isn’t that far away from Baltimore, but I’m a driving wuss), I’d show up and give you *such* a hug — gentle, of course. You are quite a gal, and I say that only from what I’ve observed on FaceyPlace, Rav, and CY.

    My only advice: Take it one day at a time. If that’s too much, then take it an hour at a time. Rage when you need to, withdraw when you’ve had enough, and always — always — remember that you are loved. {Mwah!}

  23. Martha
    July 15, 2014 at 8:40 pm

    I’m so sorry that you are closing. On the other hand, I’m happy that you are taking a break & making yourself rest! I bought some of your yarn at MDSW 2013- my first trip. Whatever it becomes, it will be more special to me now. Also remember that Cephlapod will live on in all the things fiber artists will make from it! Peace.

  24. SlpBeauty333
    July 15, 2014 at 8:58 pm

    Sarah,
    I’m so sorry to hear this news. I remember friending you on Twitter and chatting and playing Fallen London and never realizing you were part of CY! I think I was bragging about how awesome this yarns was and you were like “Um, that’s me.”
    I wish you all the best with your future endeavors and peace during the transition.
    SlpBeauty (aka Kathy)

  25. Dorie
    July 15, 2014 at 9:17 pm

    I was so inspired by you when we met a year or so ago when you presented at The Textile Museum and I hope that you will find some joy and peace. I lost my husband of 30 years to a sudden heart attack last May, so I totally know about how bodies can turn on you and how it’s necessary to reinvent oneself. Thank you for making the lovely yarn and for being so honest.

  26. Kristina
    July 15, 2014 at 9:41 pm

    This breaks my heart absolutely to the core, so I cannot imagine what it has done for you. We met only once- at Stitches South a couple years ago. I spotted your booth and you spotted my octopus necklace and there was a momentary sisterhood shared.

    Knowing how much I have ADORED your contributions to this point, I can only look forward to what is yet to come. Brilliance like yours cannot be diminished just because it’s being reflected in a new way.

    Best wishes & many blessings!

  27. July 15, 2014 at 10:31 pm

    I am so angry right now. Yes, it’s the first stage. I love you both so much.

  28. Cora
    July 16, 2014 at 4:29 pm

    I have been reading your “simpler life” blog and didn’t realize your situation at the time. I can only say, that giving up what you love because your body won’t let you do it, SUCKS. I am a massage therapist with Fibromyalgia and scoliosis. I have had 3 spinal fusions and topped off by the FM, my body said, “No more”. Massage therapy is my passion. Everyone knew this was what I should be doing. I never felt like I was going to work, because I loved what I did. I know, you know what that means. You will find, in whatever capacity possible, a way to continue to live your passion. I have. I don’t do massage anymore, but it remains a major part of who I am. Sending you hugs and prayers.

  29. Rachel
    July 16, 2014 at 6:46 pm

    I am sorry to hear about this. As someone with neuro problems, but without a real diagnosis yet, as to why you have made this decision I get it. I have spent the last year telling people why I have nothing for craft fairs and so forth anymore. My family is the same as yours (and I was the oldest in a single parent family) and they keep trying to praise what I do get done even though I am bed-ridden afterwards instead of giving me “permission” to just take it easy. So I plod along slowly and find there are less episodes.

  30. Kazza
    July 16, 2014 at 10:46 pm

    You are a brave lady and you should be proud for having fought on for so long after most other people would have given up.
    As an older child I so understand the pressures and guilt we put on ourselves to be hardworking and a pillar of strength. But, like professional sportspeople and mountain climbers, we can only be physically strong for so long when life makes us move onto another path.
    You obviously enjoy photography and writing, perhaps this very painful decision that life has forced on you is an opportunity to redirect your creative passions.

  31. Jenny
    July 16, 2014 at 11:40 pm

    You are courageous.

  32. Carolyn
    July 19, 2014 at 9:43 am

    I have no words nor remedies. The body is just a nuisance sometimes. I also bully through and will be just as devastated when they tell me that I have to stop. My thoughts and prayers are with you as you search for peace and rest. Good luck and God speed.

  33. July 23, 2014 at 7:45 am

    I met you in Baltimore – when I visited your wonderful studio. I was struck, then, by your love of the work, as well as your professional community. You and Sam were such great guides and hosts. ( I just came across the name of the website developers you were kind enough to recommend – which caused me to remember you, once again.)
    I am no Pollyanna, but I will tell you that it has been proven to be, more than once, that as one door closes, more are quietly opened. You are a gifted and honest writer – which will be a source of comfort for others as you continue. You are also a visual artist with a love for color and harmony and that will serve you in another, yet to be determined, way. I will hold you and your healthy self in my heart and mind. I wish you all good things and improving health. Bless your intelligent heart for honoring your body with this necessary sacrifice – more will be given and good things will come.
    Thinking of you, daily,
    Phyllis Howe
    knitting & howe

  34. Ruth Boelkins
    July 26, 2014 at 7:18 pm

    Blessings to you, Sarah, and to Sam. I so enjoyed the time together at Stitches West in 2013, when I worked with Karida and we got to hang and out. My heart aches with you, as you close a chapter of The Life that is the studio and your work there. You bring so much beauty to the world, and I know you will continue to do so, however you are led. Slow down, be well, and keep writing! You bless me with your honesty and insights.
    Ruth

  35. puck
    August 1, 2015 at 8:10 pm

    So much love and healing thoughts to you. Your beautiful yarns fill a small shelf of my stash and i will cherish them and be sad when there are no more. I am glad you are going to find time to rest and hope and pray you find time to heal and recover your physical strength (you obviously have no lack of mental and spiritual fortitude!) as you forge new paths. best wishes in your brave, new future.

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