what has to be done

I have a ritual that for my twice-daily dressings. It involves the expected hand-washing, opening of sterile wrappers, cleaning and laying out of tweezers and scissors, a dousing of the affected area with saline. Then I start to breathe.

In my yoga practice my teacher taught us to send energy through our bodies by imagining a furnace sitting at the base of our spine. With each breath in we stoke the fire of that engine, make it burn hotter and brighter, and as it enlarges and warmth shoots down our legs and arms--creating arcs of energy that spit out of our finger and toe tips. While I am doing a dressing change and I breathe this way I am less interested in shooting sparks out my fingers bit--rather, I imagine a pinwheel of fire in my belly that sends its light to my leg. The light warms and soothes the tissue, preparing for the moment when I have to grab the tip of the gauze that's packed into the wound and pull. It doesn't come easily--it is packed in with pressure and cemented by blood and slubs of new tissue. And that's exactly the point--the pull debrides the wound, "cleans it," keeps it open. For me it is a horror to hurt myself that way--to rip open a sore that is doing its best to heal closed. To tug at the tissue that is so raw and tender from months of inflammation feels counterintuitive from my deepest fibre. I find that it's only when I breathe my special way that I can make my hand do what has to be done.

As I performed my ritual this morning, my mind stuck for a moment on how "this has to be done." In my case it has to be done in order for my surgery to be effective. But I let that thought expand and enlarge as I thought of other times in my life that I am doing what "has to be done." I thought of my life as an amputee, how much of that is simply finding ways of doing what "has to be done." Walking with a prosthesis, ignoring the stares of passersby, standing unselfconsciously in front of a classroom--not easy things, but to me they are not courageous, heroic or unusual. They are a means to an end. I have little choice in the matter. Like the gauze that must be pulled, I cannot change my physical difference. It is what "has to be done" for me to move through my daily life.

And of course we all do things every day that "have to be done." It occurred to me in that moment of gauze pulling that my situation is no way unique. It is what makes me just like you. You have lots of things you have to do, things that bring a twinge of discomfort and frustration-- even outright pain. But they are "what has to be done."

Although I didn't articulate it in this way when I first began blogging, I would say that most of my online writing (at least on my personal site), is my attempt at making peace with the "what has to be done" of my life. A big part of that is writing about my disability. Because it's so often difficult to experience the pity of complete strangers, I need to discuss what that feels like. I need to tell the story of what happens when a one-legged woman walks into an athletic facility or is harassed by TSA employees at the airport.

Last night as I was hobbling across the living room in frustration--trying to walk on my fake leg and my wounded leg and taking one big leap to the sofa because I just wanted to get off of both of my feet as fast as possible, my daughter came over to comfort me. She expressed her sympathy at hard it must be for me to walk right now. I was angry and tired and hurting. I looked up at her standing over me and suggested that her life might be a whole lot better if she'd been born to a Mom with two good legs. A Mom who could be outside playing and running and not one who had to ask for help each time she needed to use the toilet.

CatGirl, with all of her young wisdom said, "I only know what I have. I don't know what it's like to have a Mom like that. I only know what it's like to have a Mom like you. So I only want you to be my Mom."

I think CatGirl understands a lot about "what has to be done"--maybe more than I do. She knows that you only know what you've experienced and that's that. So "what has to be done" for her is to be gentle with her Mom when she's healing, to refill my water cup, to not complain as she trails alongside me through clinics and hospitals. She hears me scream and cry when I'm hurting and she takes in in stride. This afternoon she patiently helped me clean off all of the adhesive residue that was still stuck to my arms from my latest round of IVs--knowing that I couldn't reach the goop on the backs of my arms myself. It was "what had to be done" for her Mom.

I think I'm still learning "what has to be done," and that's why I keep blogging. I've got to write to make sense of my place in this world, to understand the madness and beauty and arbitrariness of it all. And I also feel like someday after I'm gone (let's say in 30 or 40 years from now) CatGirl might be facing something as painful as having to debride her own wounds, and maybe she'll look back on this blog--these thousands of words that I've written here over the years--and something here will strengthen her to face the realities of her life. To do what "has to be done."


Lorell said...

and tears are rolling...

Many points in this struck me, especially because I have felt the same way regarding what I cannot give my kids, but the one line that continues to resonate is: "I've got to write to make sense of this world, to understand the madness, and beauty, and arbitrariness of it all."

It does make it a little less painful when "it just has to be done."

I take it that you are not going to Sunstone either?

Wanna have a pitty tea party? ;)

Kathryn Quick said...

oh my. you helped more than you could imagine with this. I needed the strength to live with what is at the moment, which isn't particularly pretty either, and you provided it with your usual honesty and wisdom. Thank you.

littlemissattitude said...

I, too, am dealing with "what has to be done" right now, and it sucks sometimes. Recently, it sucks big time.

Reading what you wrote really helped.

Thank you.


Anonymous said...

Jana, I loved this piece. Honest and introspective and powerful.

I've been thinking lately a lot about those things that must be done. I remember when we exited our graduation ceremony early, airily telling the security guard that we were both disabled students and had to leave, when everyone else was required to stay in their hard and hot seats in the middle of Aldrich. Since then, I've encountered so many people who have hard burdens to carry ... physical, emotional and spiritual. And I've had to swallow the realization that my seeming tsunamis of obstacles are just droplets in an eternal ocean.

And yet, there is joy mixed in with all the pain, if I look hard enough. Rodin said, "Nothing is a waste of time if you use the experience wisely." I can't help but feel that the troubles we encounter in this life enrich our ability to feel joy and gratitude for both the mundane and exceptional.

Anonymous said...

I find that life is, as you say, arbitrary. Any meaning we ascribe is simply our monkey brain doing it's thing, and that for me is the miracle: bringing order to chaos, love to pain.

catbonny said...

I feel like I have been doing a lot of what has to be done lately, and a lot of what has to be done for other people, rather that myself. It's really draining, but I hope that by helping other people with their needs I am somehow making their life a little bit better or easier.

CatGirl is so very lucky to have you as her mother, and to be so young and to have gained this insight and resolve to be content with your life experiences because they are the only ones she knows.

I can't say anything more profound than that my heart really feels what you said in this post.

Thank you so much for blogging and sharing how you make sense of things. It's so very comforting and such a wonderful personal experience to gain perspective from a friend like you.

Lessie said...

This really is beautiful, Jana. Thank you so much for sharing.

Bratfink said...

I've been dealing with some open wounds on my legs that had to be debrided, so I really understand what you mean.

And oh, so much more.

Anonymous said...

I reached your blog through dooce and now want to read yours daily also. There is strength, wisdom and hope knowing others struggle, sometimes it seems that when in pain we are alone. Thanks

Eddo said...

Wow. Nice post. I use my blog the same way, it's my therapy. I don't care about readership, or comments, or daily visitors, I only care that I get to go to a space and type some thoughts that have been packed inside my brain and are dying to be released. With each post I share a bit more of myself and I hope to some day share all of who I am with someone, but for now, I'll be content with sharing in tiny pieces.

We all have wounds, we all have stories, some more horrific than others, but how we deal with them, how we face adversity defines who we are as people. It isn't the easy times... it's always the hard.

God Bless and thanks for sharing a piece of you.

Tracy Lynn said...

This describes so well the feeling that I have when people express pity about my kidney failure. I, too, am just doing what needs to be done, and trying to do it with as much grace as I can muster. Thank you for writing this.

Heidi Renee said...

Thank you for writing this. I was the daughter that knew what had to be done and my mother died before we had a chance to share a moment like this.

Please know that your daughter will be stronger than you can ever imagine and love you forever.

Dejah Thoris said...

My Dearest Friend,

I am likewise moved to tears. As another person with in this case a hidden disability, life has indeed been about "what has to be done."

But despite that, you of all people have taught me to value the droplettes of sunshine, of a good meal with your family and friends, of traveling to new shores, and embracing the unexpected gifts.

Right now, as I transition through this time in my life of new horizons coupled with loss, I am indeed dealing with near daily oxymoronic situations that both make me feel broken, shattered, and fully immersed in pain, yet with the realizations that indeed I am loved, respected, and brave. Old wounds that I had thought had healed are being re-opened, drained, cleansed, and from this horribly painful experience, I am slowly finding myself emerging from it a far healthier person, and I am finding that at times, doing what has to be done is less, and savouring the moment is also a reality.

Catgirl is right; we only know what we have. We don't necessarily wish for different once we've come to terms with it. Kids see through the crap. But that she was able to say that so compassionately to you is testimony to the loving, evolved parents that have raised her.

Finally, to know that the lessons on energy movement have become part of your being so beautifully honours me in ways you can't possibly imagine.

Namaste. YOU are my teacher.

Anonymous said...

This entry packed a punch and brought me to my knees. It's a fine thing to find a gifted writer...they are few and far between. I look forward to reading more of you.

Zhoen said...


Zazzy said...

When I was in the hospital recovering from almost losing a leg I met a friend recovering from an amputation. We bonded over the 1-10 pain scale, me with my 27 and her with her 600. In rehab together we did the things that had to be done.

I think at some point during those 6 months each of my friends came to me and said, "I couldn't do that." Of course you could, I'd reply. "You do what you have to do."

I think I forget that sometimes today. I've adapted and I'm not always in the moment. I complain about frustrations that really aren't that important. I appreciate the reminder and I wish you good health.

p.s., regarding looking at the wound, I think I managed to never look directly at my open wounds. Part of me is curious and would like to see the hospital photos, the rest of me is content not knowing.

Anonymous said...

What an amazing woman you are. Thank you for sharing your strength through your blog and reminding us all to keep on doing "what has to be done." Sending lots of well wishes your way.

Am I doing okay? said...

What a beautiful post. You are inspirational.

Anonymous said...

It is 'what has to be done', but at the same time, it is still somewhat of a choice. The alternative would be merely to wallow, to give up. By doing what has to be done, you are choosing to press on, to try and really live. So though it may not be all that unusual, I still call it courageous.

Becky Andrews said...

My daughter just directed me to your site. Your words are powerful and I could relate so much to so many times of thinking 'it just has to be done.' I look forward to reading yor blog . . Love, Becky

Suddenly Sixty said...

Thank you for sharing your pain, pride and wisdom. It makes me feel more human to know you exist.

Anonymous said...

Jana - what beautiful words. I just found you through dooce. I think we all amaze ourselves sometimes when we look back at how we just DO "what has to be done". I just wish, so many times, that I did it with more grace.

wilderness said...

As a one-handed guy from birth, I like this quote:

"I seldom think about my limitations, and they never make me sad. Perhaps there is just a touch of yearning at times, but it is vague, like a breeze among flowers. The wind passes, and the flowers are content."
-Helen Keller

Kelly O said...

That was beautiful, just lovely. Rock on, woman.

Anonymous said...

Just found you via dooce.com...

You have an amazing daughter...wow, kids really have the capacity to understand where even we cannot figure things out sometimes. They are truly amazing. I'm so glad she's there for you. I'm off to read the rest of your blog now, I'm hooked :-)

Txgrrl said...

Oh man, I totally feel you. I had a heart transplant in Dec 2006 and spent 3 1/2 solid months in the hospital. One month of that, I couldn't walk or do anything by myself. After my surgery, I was so atrophied from my month in bed, I couldn't move easily on my own for a long time after.

The words "do what you have to do" became my mantra as I needed help for everything. I couldn't even wipe myself. When your husband of only 3 months has to do that for you, that's a "do what you have to do" moment.

And frankly, it sucks. Things are better now, much better, but I've so been there. You have our support.

Anonymous said...

That was beautiful. I wish I'd learned that lesson as young as your daughter has.

You're a lucky mom, and she's a lucky daughter.

Thank you for sharing.

iJuls said...

Beautiful and insightful.

DayDreamer said...

I found your blog just half an hour ago and the tears have been falling ever since.

I admire your honesty and bravery and I'm ashamed of my own lack of both. You make me want to be a better person - many thanks to dooce for linking to your site.

John White said...

I banged my left knee against a desk a couple minutes ago, and was like, "Ouch! How am I going to get through this?"

Then I remembered this post and was like, "I bet Jana could find a way to deal with the pain." And I tried your breathing exercise, and the pain faded over the next 20 minutes! It totally worked!

It also helped me get through my chapped lips last week. "I bet Jana would remember to apply Burt's Bees lip balm!"

Someday I hope to have my own kid who reassures me whenever I bang my knee or have chapped lips.

But in all seriousness, you have a wise daughter. Just tell her every once in a while to spell her brother at dish-washing. He should get a chance at drying and put-away too.

jana said...

hey with-an-h:

Thanks for keepin' me humble, man. :)

BTW, I don't think the Filling Station has the OC's best pie. Bummer.

Carla said...

I got to this post from Dooce.com - and I think you're amazing. I have cystic fibrosis. I know about wound care, IV antibiotics and nasty resistant infections. It's "what has to be done" for me too.

I really enjoyed reading this. Hang in there!


BB said...

You humble me utterly. As do each and every athlete at the Paralympics. You write so beautifully, you made me cry. Hope you keep finding the joy. Hugs from the other side of the world!