We think about our lives in different ways, on different days, trying to make sense of the incomprehensible.
Some days I think of my life as a long trip; a rough journey at times, an easy skate at others. In the movie Parenthood, Steve Martin comes to a place of peace when he envisions his life as a roller coaster. I find this a helpful analogy.
But there are periods when my life feels like a war zone – I think all of us feel that way at times – but it’s never been so vivid as in the past few years.
And, of course, being a child of two members of The Greatest Generation, loving history as I do, and making a hobby of reading about Europe in the 1930’s and 40’s, the war I can most easily reference is World War II.
This past year I’ve read several first person accounts of London before, during and after the war. The courage of the citizens is well documented; the steadiness, humor and ability to keep some semblance of a daily routine have resonated in my own personal life.
Early in the war, the citizens of London found ways to cope with incomprehensible terror. But exhaustion and time led to a war-weariness that made subsequent rounds of bombings 4 or 5 years into the conflict harder to bear. I identify with those late-war Londoners, too bone weary to head to the air raid shelters, numb with daily terror.
As many of you know, Gerry, my husband, has cancer. Multiple Myeloma, to be specific. When he was diagnosed in 2007 – soon after our family moved to Minnesota – the prognosis was poor; 2 years. At the Mayo for a second opinion this was reduced to 1 year, and a blessed numbness settled over both of us when we heard that.
A friend refers to this sensation as ‘god’s anesthesia’ and that’s not a bad way to think of the mind block that keeps overwhelming pain at bay. I wrote about our first year with cancer in my book Knit With Courage, Live With Hope, and it was a helpful way for me to face fear head on. I’ve heard from other caregivers that it has been helpful for them, too.
Fast forward 5-1/2 years and Gerry’s still with us, we feel that we are the most fortunate family in the world, even though the anesthesia has long worn off.
And I am exhausted.
This past Autumn Gerry’s cancer came back (his numbers were slowly creeping up since last Spring) and a new round of a trial drug, Revlamid, seems to be working well. His test numbers are up where they should be, down where we want them to be, including the dreaded M-spike.
But during those 5-1/2 years, aside from the many joys that our family has shared, something started happening deep inside of me; the slow, steady, unrelenting rise of fear.
A deep, broad river of apprehension runs through my life, fed by tributaries of dread and panic.
The first fear is obvious; fear of losing Gerry. But in the time we’ve had since his diagnosis I’ve lost so many friends and family members that this fear has been wrestled into perspective. It’s an understandable fear.
Right behind that first fear are all of the regular fears anyone in my position might feel: fear that I won’t be able to earn enough to keep the family going; fear that the kids will be strongly affected in a negative way by our experience; fear that Gerry will have more pain. All understandable fears.
The less understandable fears are the ones that haunt me: Fear that I won’t deal with this graciously (I haven’t at times); Fear that I will be harshly judged by outsiders (I have at times); Fear that as I struggle through this adventure I’ll behave in ways that are erratic and incomprehensible (I’ve done this, too).
And these fears, in turn, breed next generation fears that often DO overwhelm me: Do folks look down on me because I’m unable to cope with the fear? Am I really just plain weak, deep down inside? If I ride my bike an average of 8 miles a day and eat fairly well, why can’t I get thinner? (okay, this last more of a whine than a fear…)
Enumerating these anxieties helps me understand how fear can spiral out of control, overtaking common sense with panic, shoving self esteem out the door and replacing it with it’s doppelganger, pride.
Unlike self-respect, which is positive, life enhancing and resilient,
pride can be easily bruised and shattered.
Then, on the worst days, terror comes in uninvited. It kicks pride to the curb and allows self doubt, self loathing and self hatred to make a house call.
All of this anxiety creates stress, which overwhelms me.
I’m certain that – to a large degree – the genesis of my fibromyalgia is rooted in this stress. I believe that my current week-long intense back pain is a product of stress.
Spinning my wheels is how I deal with stress; sometimes I spin my wheels with non-productivity (Tetris and Scrabble, anyone?) and other times I bicycle. The biking is much more effective, and has a double benefit of reducing stress and physical pain while increasing strength and overall fitness.
But it’s winter, not a lot of bicycling is going on, and my body and mind are paying the price. I do yoga in the cold weather, I was swimming but found myself feeling so panicky in the pool that I had to stop, but nothing is like my bike.
It’s been a very rough Winter for me, fearful and painful and so many other bad-ful things. I second guess myself, my work, my abilities, my looks; then I third and fourth guess everything just for good measure. I’ve been in a bad place, re-living every negative interaction I’ve had, replaying every nasty comment I’ve overheard (or over-read), and it hasn’t been helpful.
And because I’m in a rather fragile state, the casual nastiness of an online comment or a thoughtless action are weightier than they would be if I were in a more stable, healthy place of mind.
I need to cross Ol’ Fear Creek, which has so overfilled itself that it’s now a raging whitewater. I’ve tried several times to throw myself into Terror Rapids, only to discover I’m no good with a paddle.
And, at any rate, Terror Rapids is probably a better place to be than Sh*t Creek…
I need to build a bridge over the fear, high enough above the raging river that I don’t get wet as I cross. I’m not exactly certain how to do this, but I feel sure that I have the tools and materials at hand.
Annie, you are remarkable in so many ways. I know you didn’t write this to hear comments like that, but besides all else you do so expertly, you have an amazing way of articulating a range of very complex emotions. That alone should help you moving forward. While I don’t share the challenges you face, we all have unique “bodies of water” that we navigate and you summarized how I feel very, very often. Thanks for helping put such a wild variety of human emotions in perspective–I could not have ever done it this well!
I have watched you coping gracefully with all of these affronts with admiration and awe. If you have days when you are less able to cope that is nothing but human and completely understandable. I have kept you in mind as an example to follow in my own life.
I know you are not perfect. I do not know why some people feel free to say anything that floats through their tiny heads, however careless or hurtful.
These people need have no bearing on your life. Delete the rude comment, moderate with a vengence. This is your space and if you are gracious enough to invite us in you are entitled to escort us out if we don’t know how to act. On the Internet no one need know you are a dog, but we all know when you’re a bitch!
It seems to me that someone with the grace and insight to verbalize these difficult thoughts is already halfway over that bridge. You do indeed have the tools. Carry on, girl.
I am crying as I read this and want to bitch slap all those individuals who judge others and feel it is there right to build themselves up by putting others down. It is their failings and lack of empathy, not anything you have done that makes them strike out against others. They do not have the strength to look closely at themselves; it is much easier to put someone else down than to identify and correct their personal failings. I wish I could reach out and hug you right now.
Don’t bitch slap anyone, even in your mind. I’m trying hard to forgive folks who – either intentionally or unintentionally – have said unkind things.
Annie, consider yourself hugged. You are a wonderful and talented person with a terrific family. Give yourself the same “break” that you would give someone else under the same circumstances (easier said than done). Winter will be over soon.
My g-d that resonated with me! I’m currently feeling “anxiety” most likely as a result of the goings on in my life the last four years. Physical and emotional reactions set in. my body clenches in fear and then t hurts, I tighten more against the resulting pain which results in a spasm and more pain. I too have learned about my body and how to bring it back from the edge but I also just described feeling so ‘tired’ too.
On my ability to simplify my life, fashioning a bunch of coping mechanisms on my own, time has just run out. The resulting crash has meant some small amount of a prescription drug to ease the emotional panic that I can’t keep it together, am not keeping a lid on. Without them I’m sure my head will fly off, and that somehow the world around me will consequentially be damaged and so will I. The med will be followed by some therapy to deal with the really messy stuff: unresolved issues and a perspective severely out of whack!
Does it help you to know you aren’t alone? I’m not at all sure it does, even one little bit. But I do feel compelled to say you aren’t, alone. Because it often surely does feel as if we are alone with our baggage and that no one else gets just how painful that is. So yes, I get it. Good luck and smoother sailing and a relief from rough waters, to us both, and anyone else feeling the pain….
I’m so grateful to people like you who share their struggles. I’ve no doubt that it helps out others and it is my sincere hope that it helps you in naming it and knowing you are not alone. Sending lots of good thoughts your way.
This may not be helpful (and certainly not while your back is bad), but would one of those bike trainers help for inclement weather? My brother has one for his road bike in the garage that he uses. He seems to like it. Obviously, it’s no comparison to being outside, but he at least gets rides in.
I really dislike the mean people. I remember a few years ago, you wrote about trying to get coverage for your meds and a commenter said we americans have the best health care in the world, so I guess she meant stop saying you don’t have coverage? As Hillary Clinton said recently, some people just will not live in an “evidence-based world.”
When I am as exhausted as you, I take a rest every afternoon at the same time for at least an hour. Clothes off, in bed, listening to an audiobook or watching any mindless TV show I want (Girls, Chef! ,The Carrie Diaries anyone?)
I also started dimming my electronics and lights in the bedroom and bathroom a few hours before bedtime. I turn off the light at the same time every night and plug in some old radio shows (recently Perry Mason) into my device.
I have no way of knowing, what will give you more rest, but I hope you keep trying because you need real restorative rest.
Annie,
You’re awesome. Brave as hell, smart, funny and beautiful.
Context is everything. Everything you’re experiencing is part of the human condition.
Many of us are in denial, or addicted or find other ways of avoiding all the insights and
fears you’ve expressed so courageously.
Get yourself a meditation cushion. And practice letting it all go. Sometimes, often, we have to practice a lot. Go on a meditation retreat. Leave the world behind for a weekend, or a week. You’re ok. You’re actually more than ok. You are living a full, transparent, big life of love, perseverance and conviction.
Your kids, and Gerry are so lucky to have you in their lives, as are we. xoxo
Susan
My dear Annie. I had no idea what you’ve been going through. I’m so sorry your beloved Gerry has been going through too much. And no doubt you have kept your family, your marriage and thirdly yourself intact as best you can. That’s all you can ask of yourself. The Annie I know (and sadly haven’t seen since 1988) is so strong, so talented, so caring, so beautiful. If I may be so bold … don’t give a rat’s ass what others say about you or think about you. That’s their issue to deal with and frankly, don’t give up any of your energy toward even thinking about it. Just keep putting one foot in front of the other as you are already doing. Believe in yourself. It breaks my heart to know how difficult some things are for you right now. Make a list of everything that’s positive. It will truly help. You have a myriad of friends and loved ones who TRULY care about you, starting with me. It’s great you started this blog. It’s so cathartic to be able to write about how you feel. I love you and am sending the biggest hug possible.
Annie, I know how you’re feeling. The see-saw between fear, anger, sometimes even forgetting. You’ve been heroic and tough. You can be soft and hurting when needed. There will always be your support group out here wish you good things and praying for both of you.
Annie,
Your eloquence and self-awareness are continually amazing and inspirational.
I understand much more of your journey with fear, than I would ever care to. The “river of fear” is something that I’ve dipped my toe into more than once over the last 15 years. A couple of times I’ve fallen in completely.
I hope you get some relief from this current “bombing” of Fibromyalgia. I am so glad that the Revlamid is doing its “thing” and hope that it continues to do so.
Know that you are often in my thoughts and that you and your family are in my prayers.
Tony D.
Take care, do what you need to do and ignore the small-minded. Theyare, by far, outnumbered by those of us who understand you, appreciate your candor and wish you well.
The combination of Revlimid and Velcade got my Multiple Myeloma in remission 2 1/2 years ago. I hope the Revlimid will do the same for Gerry.
That’s so great to hear – I hope your health continues to improve, and Gerry’s does as well!
I’m so sorry to read this. What do the mean people **get** out of being so mean? Please take care of yourself and Gerry – thousands of us out here follow you, and love you.
Annie, I am a senior citizen. Have spent most of my life with mostly unstated fear. I watched how it destroyed my mothers joy in living so have always tried to own and face my fears. Some things that have helped me was learning to ‘mother’ myself in ways that helped me feel loved. Also someone suggested to me that folks who can’t hear or understand often just aren’t ‘available’. I like to think about that when I’m feeling hurt because it seems helpful, not accusatory. At age 66 I taught myself to knit. I am a leftie and self taught. Had always thought I was incapable of managing this skill. This opened the door to much self esteem and feelings of peacefulness while thus occupied. I learned the engineering component and studied EZ,s methods which allowed me to start designing my own things.
Your comments about pride vs self-esteem enter my mind here as I realize that sometimes I get prideful about these accomplishments rather than true self-esteem. Then I have to remember that those are leftover criticisms that I’m letting in again. I think I am getting off track here. It is hard to not overtalk a point sometimes.
Don’t know that I’ve been a bit helpful. I do note that your Scrabble scores are great. I enjoy escaping to my scrabble a bit everyday.
Annie, Please know that you are not alone. If there is anything the rest of us can do to help, besides keep you in our hearts and prayers, let us know.
If you tell me Gerry’s Hebrew name (Gerry son of his mother’s name), I will add him to my Mi SheBerach list.
I wish I lived closer so I could offer physical help. We have so much in common it is sometimes spooky.
He’s Gedaliah ben Sh’muel v’Etta Rachel. Thank you.
Annie:)
i applaud you!
For your honesty most of all.
Keeping you all in prayer.
(((((u all))))
peace&blessings
There are some people who have WAY too much time on their hands and decide to be mean rather than helpful. Call it warped, sin or nerousis. Some folks are just plain mean. And like a pile of hot mess just step around it and move on.
For fear all I can suggest is preparation. When you have your legal stuff in order, and a solid medical team helping you, you have done what you can to confront the real crisis in your lives. So go and live. Live for your kids and with them. Live the life you want to have as a family NOW because you have already planned for tomorrow. Live in G-d’s grace now so that when sorrow comes (and it comes to everyone someday) you have the memory of joy to pull you through. May you be held up by those who love you and by the peace of G-d.
I agree that preparation is important, and we do prepare. But I’m not certain how we would prepare for 5+ years of living ‘in the trenches’ and enforced reduced income (we were the type of folks who had 12 months of mortgage in the bank at all times, etc., but we went through that about 2 years into this.)
I appreciate your kind thoughts, I really do, thank you so much.
The point of my post was, though, that even WITH preparation, positive thinking, hard work, vigilance, there is still so much fear because – at this point – one block falling out of place can set the whole thing crumbling. I can’t imagine any preparation that would have carried us this far.
Of course you’re living with fear. There are tough things going on in your life and they have been going on for a long time. I agree with others that writing about how you are feeling is a show of strength and a good step in the process of coping. You just have to manage one day at a time.
Is there a “freecycle” group in your area and do you participate? You might be able find a bike trainer via freecycle or perhaps you can borrow one via a neighborhood or synagogue listserve. I have one on long-term loan from a colleague who doesn’t use it. It is very helpful in my final recovery from an accident. I also suggest meditation; even 5-10 minutes a day can be helpful.
Take care of yourself. I wish you continued strength and courage.
Excellent idea. Here’s my guilty secret – I DO have a trainer! I used it QUITE a bit 2 winters ago, last winter it was warm enough that I got out for a decent ride at least once a week, and this year I hadn’t been able to figure out how to get my new bike into it. I need to, and I will! Thank you.
Annie how about picturing us, your fans and friends lining the bridge and offering hugs as you go. I know I always feel better with a hug to help me on my way. Thanks for offering insight on how to deal with fear. We all have to face it and deal.
I will. Friendship bridge. Thank you.
Dear Annie-
Over the years, your words have brought me comfort and inspiration–along with many smiles and giggles. We are the same age; we share the same interests and education, and your daughter shares my birthday.. so I have felt a certain connection with you.
I understand the war zone analogy…and I also understand the weariness and numbness. I put up with a verbally abusive marriage for 28 years.
I don’t know what will work for you. I have no magic words to make anything easier. I only know what worked for me.
On March 13, 2007, Franklin Habit wrote on his blog “The Panopticon” a quote from Lord Buddha-
“These are two things Buddhism has taught me, and that I believe:
All things are impermanent and change is constant.
Suffering arises from the desire to hang on to things that are impermanent or control that which cannot be controlled.”
These words profoundly changed my life. I realized that the only things that I could control were MY actions and REactions to life events or to other people’s actions. Because of these words, I stopped reacting when my (now ex) husband tried to pick a fight or belittle me. It diffused the anger in me. And it gave me the strength to leave the marriage.
Another quote that helped was from Anthony Hopkins-
“My philosophy is: It’s none of my business what people say of me and think of me. I am what I am and I do what I do. I expect nothing and accept everything. And it makes life so much easier.”
Annie- you are what you are. You are the best YOU that has ever been created.
I understand the “big scaries” that are out there. How will I be able to keep a roof over my and my childrens’ heads? How can I do this alone? How will I survive?
Annie- you will not only survive… you will THRIVE.
These years you have had with Gerry have been and will continue to be precious. And in watching how you two deal with the everyday struggles of life… and yes, death… your children will learn the true meaning of honor, commitment and love. And these lessons they will pass on. And so you will change the world.
Yep, I know you would like the merry-go-round instead of the roller coaster right now.
But truthfully, the roller coaster is a LOT more interesting in the long run.
If it were easy, anyone could do it.
But you are not just “anyone”. You are Annie Modesitt. Incredible designer. Incredible knitter. Incredible wife. Incredible mother. Incredible woman.
You are extraordinary.
And as Stephen Schwartz said “When you are extraordinary, you gotta do extraordinary things.”
You are in my prayers.
Damnit, I was just keeping the tears at bay until you quoted Pippin! Had you quoted Into The Woods I’d be in a full out blubber-fest. Thank you, the quotes are excellent, your compliments are VERY sweet (unnecessary, but oh so great to hear, thank you!) and your kindness glows. Thank you.
Hi Annie,
I am a new reader… I realized I was knitting the “wrong way” (which turned out to be combination knit stitch), researched it, and then found you!
Thank you for sharing all of your knowledge, and more importantly, thank you for sharing your vulnerability. Everyone is vulnerable about something (about themselves, a situation, etc.) but we rarely talk about it. I am grateful to see you sharing yourself so openly with your readers, because it reminds me – and others! – that we’re not alone with our various fears.
Two books that have helped me enormously, that might help you:
“Finding Your Own North Star” by Martha Beck
“The Gifts of Imperfection” by Brene Brown
I hope it’s clear from all the wonderful comments here that you are loved for who you are! 😀
Annie, though I knew your name, I wasn’t that familiar with you as a designer. But I just heard you on the Yarn Thing podcast and fell in love with your wit, generosity and openness – not to mention your designs. So I decided to find your blog. And this is the first post I read. While more sedate, the same qualities are still present, and now with an underlying strength that comes through. Because that was what struck me reading this post – my, what strength! To open up so much of yourself to the world and, in sharing, help yourself and others – what strength! What beauty. Thank you for sharing so much with so many.
Hey, I’m not sure where else to put this but your website has been hacked — I get a bunch of Cialis & Viagra ads when I see the site, and those show up in your search results too.
This is probably a WP exploit called the Pharma Hack. Info on fixing it is here: http://www.mrmoneymustache.com/2011/09/05/mmm-has-been-hacked/
Thanks – I’m looking into how to fix it!
Annie…bless you and your family. We’re praying for healing and peace.