Carolyn Gage
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About Me... and ME.

12/31/2017

31 Comments

 
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 II have been feeling frustrated lately, and I think some of it comes from my friends not understanding what’s going on with me... So I am going to tell you a little bit about that... about  what is actually going on with me.
 
I am disabled. I have celiac disease, which I inherited from my mother. Born in 1920, she was one of the first diagnosed cases of what they used to call “sprue.” Her doctors hadn't realized that gluten was the problem, but they did realize that these sick babies would start to thrive if they were put on a diet consisting of nothing but bananas and oatmeal for the first three years of their lives. So that's what my mother ate.

She did survive, but, sadly, she grew up believing that sprue was a childhood disease that she had outgrown. No one outgrows celiac... at least, not to my knowledge. Because of this misinformation, my mother ate wheat all her life and, consequently, suffered from a huge number of mental and physical disorders. It never occurred to her to have her children tested. As infants, we were not noticeably sick. We grew up eating wheat.
 
I was forty before I realized that I had inherited celiac from her. It took a while for me to connect the dots back to my mother’s “sprue.”  By the time I realized what I had, I was suffering from a wide range of conditions related to poor absorption of nutrients from a compromised gut.  I was running serious deficiencies in the B vitamins, in zinc, in magnesium… and I was severely anemic.  And I wasn't metabolizing fats very well. Every year, I was becoming more and more malnourished.

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My condition was compounded by Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS).  I was stricken with ME/CFS in the fall of 1987.  It came on like the worst case of flu in my life… except I never recovered. I was desperately sick for about seven years: encephalitis, petit mal seizures, strange rashes, neurofibromyalgia, debilitating migraines, sleep disorders, extreme irritability, vision problems, multiple chemical sensitivities (allergies to everything), cognitive disorders, and fatigue. Fatigue so serious I could not clean the litter box and get the mail from the mailbox on the same day. And an inability to bounce back from even mild physical exertion (post-exertional malaise).
 
I am better now, but here’s the thing: I’m not normal. Not even close. Most people aren’t around me consistently enough to realize the extent of my disability, but it’s like this: I start every day with a certain number of energy chips… let’s say 60 chips. That’s all I’m going to get for the day. And if I try to do things that require more than my allotment of energy chips, I can become incapacitated for more than a week. It's like I go to energy debtor's prison.  It’s really important for me not to spend beyond my limit. 60 chips. No credit cards. No checks. Strictly energy cash, pay-as-you-go.

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So most normal folks start their day with, say, 300 energy chips. On an average day, an average person only needs, say,  about 200. Most people never even have to think about it. They do a bunch of things all day until it’s time to go to bed. They end their day with a pile of unused energy chips. They have an abundance of energy for whatever they want to do.
 
But I have to budget. I have to  scrimp. I have to rob Peter to pay Paul.  There’s a whole  lot of calculation and negotiation that goes on in my daily activity log. When I get up in the morning, I look at what I absolutely have to do that day. That gets the first allocation of energy chips. Then I look at the things that have to be done sometime. That’s the next round. If I have any chips left, I can budget for something fun. I am mostly retired, which is a great relief, but just routine cleaning and cooking and keeping up with things like oil changes or dental visits takes much of my energy. I also have to eat a very specialized diet that precludes gluten, dairy, sugar, and prepared foods. I end up needing to cook a lot. It gets exhausting, but if I am not careful, I will wake up in the morning with only 50 chips instead of 60.

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Anything emotionally strenuous or physically demanding will run through all my chips and land me in bed. I can’t do aerobic exercise. I can’t deal with dysfunctional dynamics. Drama is a luxury I can’t afford. And travel, because of all the unknowns, crowds, toxins, and changes in plans, is incredibly challenging for me.
 
If you ask me at the last minute to do something, I am very likely going to have to say no. If you ask me at 2 PM about going to a party that night, I probably won’t have saved up the energy chips for it. I was planning to be done with my day by 6 or 7, so most of my chips have already been used up. If you had asked me two days earlier about the party, I could have budgeted, but now it’s too late.
 
Also, as an introvert, I am drained when I am around people, even close friends. Like other introverts,  I recharge my batteries by being alone. (Extroverts are the opposite.) I  have to budget the plans I make to be with people. It can use up all my chips just to host a visitor for a day, or even a half-day. If you come to visit me, come prepared to entertain yourself without me for much of the time. I need most of my time for myself.  Introversion + celiac + ME/CFS = the main reason why I have been single for most of the last 30 years. I just don’t have the energy.

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If  I am visiting you, and you have planned a whole bunch of activities, I will probably have to say no to most of them. I can budget for, possibly, one a day.
 
I love the saying, “If you see your glass as half-empty, pour it into a smaller glass and stop bitching.” That is exactly what I have done.

I have moved to a little village where I am two blocks from the library, the post office, the grocery store, the hardware store, and the town hall. I live on an island where there is a national park. I can access breathtaking day hikes in just fifteen minutes. I rarely leave the island… and my cup runneth over with beauty and gratitude.

I write for a limited amount of time every day. I’m often done with my day by 6 or 7 at night. I keep things as simple and easy as I can… and I still feel vulnerable. A flat tire or an emotional tiff can blow the energy budget for the day, and a day of energy debt can cost me an entire week.

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Am I controlling? I experience that as an unfair question. I have to live within my energy means. The penalties for overdrawing the account are very severe. How I live isn’t micromanaging to me. It’s prudent self-care. And it's not optional.
 
So, if you are my friend, that’s how I tick. I am disabled all the time. I’m on the energy clock all the time. If you know this about me, and you have empathy, that is a bonus for me. It's fewer energy chips I have to expend when I am around you. And sometimes, believe it or not, I actually get  an extra chip or two from your concern and consideration.  And that is something exquisitely rare and precious to me.

So, there it is. Thanks for reading.

31 Comments
Will link
12/31/2017 10:52:46 pm

Carolyn, thank you for allowing this wider circle of us to see you and know you better. Your words and story here have enabled me to understand a piece of a world that is not known to me in much the same way that your plays and performance have enabled me, as a cis-man, to come closer to understandng the lives of women that were not known to me. Despite everything you have had to navigate, you have created and continue to create a body of work that makes our world better. And even now you are modeling for me what it means to set personal boundaries for self care. You are a gift in so many ways. May this new year bring you strength as you need it, friends at hand when you need them, and an abundance of joy in your island home.

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Virginia Ruffulo
1/1/2018 02:43:01 am

So thankful that you wrote this. First, now I know you better and second...for a greater understanding of the disease. Love to you

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Morgan
1/1/2018 04:51:34 am

You have said it all so articulately. I do not have celiac disease but all the rest. .. inluding the introversion 😂 my life is also about daily budgeting of small energy allocations. You say it all so better than i have been able. Thank you so much from down under Australia.

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Carol Anne link
1/1/2018 07:25:55 am

Thank you for this important information. We all need to be educated about this.

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Sheryl Mase link
1/1/2018 09:15:55 am

Carolyn, you have described these issues quite brilliantly, and the way you continue on displays your incredible strength and determination. Ha, glass half empty indeed - NOT! I have loved your tent revivals and one-woman plays SO MUCH. Every time I have been so moved and encouraged to be SMART, AWARE and to FEEL! Thank you for your gifts. I am sad that you have to play your chips every day and work so darn hard at things that come easy for others. I send you chips galore, and would send them anytime you need them! Thank you so much for the amazing art you put out into the world. I am sure it is fucking hard as hell for you, especially when judged and misunderstood. Sending love and appreciation your way ~~~

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amy stacey curtis
1/1/2018 09:36:05 am

xo

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Ariana Manov
1/1/2018 09:37:21 am

I am a multiply, intersectinally, physically and mentally bdisabled lesbian senior who faces very similar challenges to your own. I could never have articulated the nuances of my conditions the way you do yours! You have a gift and you are sharing it with us. I will be forever grateful! With your permission, and full credit of course, I would like to know if I can share this with a few other people for whom it will resonate. With Fierce love and radical hope!

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carolyn gage link
1/1/2018 09:39:56 am

Sure, feel free to share.

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Rissa link
1/1/2018 10:13:49 am

Thank you for explaining this so eloquently! Makes me think, and makes me appreciate your joining us last summer for our event, and coming to the Solstice thing. I love to see you, and I am glad you save some of your chips for us.

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LaVonne Mangin
1/1/2018 11:03:49 am

Thank you for your vulnerability and eloquence. Best wishes to you.

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Marta Collazo
1/1/2018 11:13:23 am

Gracias for sharing this.... 🦋🦋🦋

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ann southcombe link
1/1/2018 11:24:16 am

Thanks so much for sharing. I can tell you are a writer, you express your thoughts and ideas so well. I can relate some of your challenges but without the disabilities (a major challenge!) I am basically an introvert that needs alone time. My being alone most of my life has been a positive choice that fits me, as I relate better to animals. :) Also, I don't eat any flour, sugar and am a vegan so I am limited abit too. I cook my food in the morning that will last a few days, that helps reduce time in the kitchen! :)

Sharing your challenges makes your accomplishments even more amazing! I have always told people how talented you are and that you must have more published works than anyone ever!! To be able to do this with limited "chips" is incredible. So happy you found paradise to hug you every day. A great place to retire, in the arms of nature! I have to say too, that of all the wonderful things that happened to you this year, I loved that you were invited backstage at "Wicked"! AND that the Sheryl Lee Ralph is interested in "Black Star"! WOW! In closing, I want to make a bumper sticker with this quote, "If you see the glass half empty, pour it into a smaller glass and stop bitching" Hugs and Blessings to you!

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Nancy Vezner
1/1/2018 11:25:24 am

Thanks for sharing Carolyn. So glad you are feeling right in
your new home. Amazing that with all you have had to deal with, you
still have done more than 20 people! Your well researched writing
has helped me feel so much more at home in the world.

I'm sure your work has helped women get to this place where
we are dealing with life head on, like you do!

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Elizabeth
1/1/2018 11:29:35 am

Given this history, you work is even more remarkable! Celiac runs in my family too. I have been spared mostly but I am very sensitive to wheat.

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Misty
1/1/2018 11:41:18 am

Thank you for having spent some of your precious chips with our now sleeping project due to my own massive speed bumps these last couple of years. I cannot say, but I hope that the dust settles mid- 2018 and we can continue and complete this creative Joy. I may even have my own personal space for that by then. If anything, a revisit might just be the thing after so many personal transitions. You are a Lamp with superior Light for far more of us than you may ever realize. I am grateful.

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Lynn Hull
1/1/2018 12:15:31 pm

Thanks for sharing yourself so eloquently and trusting us to know you better. I have had fibromyalgia for most, if not all, my life but was not diagnosed until more recently, a good 20 years ago. It shares many commonalities with chronic fatigue syndrome.
I have spent my life trying to figure out how to live with it. And still haven’t gotten it right...but your explanation makes so much sense. I am going to keep that in mind when I plan out my day so I can manage my life better! Thank you, Carolyn,

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Judith K. Witherow link
1/1/2018 12:30:28 pm

Thanks Carolyn.
I sincerely hope your words of wisdom are remembered long into the future.You are aware that I have a number of disabilities. Multiple Sclerosis, Systemic Lupus, Endometriosis that caused the loss of both ovaries and a hysterectomy, loss of my rt. kidney because of mistakes made during the former surgeries, I have a pacemaker because of heart disease, etc., etc.
Energy loss and pain slow down my ability to do many of the things I would love to do, but my hope is that others don't stop inviting me because they second guess my abilities. As a writer I have written numerous articles on these and other disabilities over the years. (Lupus strikes women of color in the largest number.)
What you wrote can easily be applied to the majority of us with seen and unseen disabilities. Here's hoping that you reached a large number of sisters, and understanding will multiply greatly.
Love, Judith

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Tangren Alexander link
1/1/2018 01:08:25 pm

I also have very limited energy - to bed at 6:00 or 7:00 is quite common for me. What amazes me about you is how you have continued to pour out brilliant work year after year. May this new year be full of recognition for your plays.

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Cheryl Haugh link
1/1/2018 01:30:43 pm

I just love you more!

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Vic
1/1/2018 02:14:45 pm

Sending your lots of love from DC!

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Fawn
1/1/2018 02:26:18 pm

Carolyn, your words (as always) provide understanding and depth to whatever they color. Recently, I also had a better understanding of Chronic Fatigue after seeing the film Unrest. It just got nominated for an Academy Award. The film (besides the subject matter) is brilliant. I think it’s going to air soon on PBS.
In addition, my friend Carol is doing work with chronic fatigue using a modality called Biophoton Therapy. You might want to check it out, although practitioners are few and far between. Have a great 2018 and thank you for your prolific and important work.

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Paul
1/1/2018 06:44:54 pm

Dear Carolyn,

As others here have said, thank you so much for your words of especially personal wisdom to friends, to add to the abundance of words of political, social, and spiritual wisdom you have shared internationally. As an introvert with invisible disability, I feel your struggles as well as understand them. A friend of mine has had some similar/some different symptoms post-menopause and she is concluding--after very little help from doctors--that it is a combo of hormone (inc. thyroid) imbalances and celiac, the latter of which she figured out years ago, thankfully. She read your post and found it excellent and welcomed me to share all this with you and readers here.

I hope that the effect of writing and posting this is that you are far less taxed and depleted in the coming years, meaning you have more chips available any time you engage with friends and the larger world. To say the least, you are remarkable.

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Lu Spotswood
1/1/2018 08:21:03 pm

You are one cool woman. I am so glad to be reconnected with you.

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Cat Voors
1/2/2018 09:09:14 am

What a heavy burden! That really sucks! All the work you have done is amazing considering. The fabulous Babe play I had the honor of seeing last July and all the outstanding Lesbian Tent Revivals! You are awesome! Thank you for the insights. I won’t hug quite as tightly the next time I see you. With greatest admiration, Cat

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Grace Skrobisz
1/2/2018 12:13:59 pm

Very well explained, Sister Carolyn. I have similar limits to my energy post-mTBI, although not quite as a severe consequence as you. But there are consequences for over-spending, or going to the limits of my energy. I use the analogy of spoons, instead of chips, but your analogy is a great one, that I may adopt. I have found that I have had to curb my intake of wheat, sugar, and processed foods as well post-mTBI. I don't have celiac disease, but my digestion is super sensitive now. and I if i don't maintain a certain protocol, then I experience a flare up of symptoms that include migraines, other headaches, joint and muscle pain, fatigue, brain fog, concentration issues, dizziness, clumsiness, nauseau, other digestive issues. Thanks for explaining what you are going through. I had an idea it was something like this, but as someone who cares about you, it is good to know the specifics. <3

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Genny R LaMorgan link
1/2/2018 07:22:29 pm

You teach us how to slow down and acknowledge our own limitations and dreams as you share yours. I am so glad you have "retired" to this island of yours, and that you find it healing. I had ME/CFS and celiac is all over our family, feeling fortunate to uncover it in our generations of daughters and granddaughters. I also just tested positive for the MTHFR gene, which probably contributed to the ME. Maybe you can or maybe you can't visit my dream farmstead in the future, sleep all day with the chickens prowling around the yard, in the hammock under a lazy tree. Maybe I can visit you. Either way, I send blessings of warm sunshine on your brow and thank you for all you write and share and become:) Love and hugs, g

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Deb Taylor
1/4/2018 11:54:11 am

Thank you so much for your writing so clearly about your physical limitations and needs.
I applaud your strategy for survival and also love your island . (Acadia Nat Park is there-correct?
Good for you and thanks for this gift!
I will share your post with my gf who has many similar issues.
I am much stronger than her and we struggle about our physical differences and live separately. However, she is amazingly kind, loving and wise and sounds like you do in being open about her needs.
Thanks so much and keep on trucking.

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Liz Bradbury
1/6/2018 02:26:42 pm

I appreciate you explaining this so simply and completely and I am glad I know this about you now. I also appreciate the information I've learned from you and shared with you about women artists. I will send you interesting and amusing things in the hopes that they might occasionally bring you a chip. Thank you for all the wonderful things you have done, written, crafted, collaborated on, and such -- the body of work you have amassed is very impressive, and I was already awed by not only hose things, but the your ongoing writing.

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Sharon Doubiago link
2/4/2018 12:40:15 am

Oh, Carolyn, I had no idea. Seemingly, you have so much energy--great energy. All your magnificent plays all over the place, your magnificent website, etc. I am so sorry that you suffer. Celiac. I'll google it. I myself have a potentially deadly disease. Hit me out of the blue 5 years ago. The MRI shows old blood --blood from childhood floating around the left side of my battered brain. From my father's rape and the 106.5+ fever I ran afterwards. Then the hits in the head. When I was first diagnosed, the first couple of years I couldn't even speak of it, so contrary to my self-image. I've been extremely healthy all of adulthood. Anyway: grand mals. Unlike you I feel fine until one hits, My heart has stopped 3 times the last year. So some part of me prepares for you-know-what. Your illness seems more devastating, at least in a different way, that you suffer daily. I'm so sorry. Thanks for sharing this. Somehow be ok. You're in my heart. Love, Sharon

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Kate Finn
4/16/2018 10:30:21 am

Hello Carolyn,
Thank you for articulating the spiritual, social, physical, frustrating challenges of ME/CFS. A good friend of mine performed in your play that was done as a musical at the National Women’s Music Festival last summer. She sent me your newsletter b/c I have retired from my life as a musician due to similar health issues. It’s taken me 4 months to concentrate enough to comment. I live in Boston. I wonder if you know of any physicians that specialize in ME/CFS. Also, I saw the Jen Brea film Unrest about ME/CFS and wanted to spread the word about that movie. Your blog post has been inspirational to me.
Many thanks and wishes continuing the good life that you have created. Sincerely, Kate F.

Reply
Carolyn Gage link
4/16/2018 10:48:16 am

If you are interested in ME/CFS and the amazing activity that is suddenly happening in this field... sign up for this free newsletter... It's very heartening! https://solvecfs.org/get-involved-2-2/newsletters/

Reply



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    “… Carolyn Gage is one of the best lesbian playwrights in America…”--Lambda Book Report, Los Angeles.

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