What you can do to help...

This is an email that I wrote to address the overwhelming need “to help, to do something” that comes into play when tragedy strikes. People feel completely helpless and lost watching their loved ones navigate the waters of horror. I know my parents were a little stunned when I told them not to come out and to wait. They heard the news and were looking into flights to come ‘help’ almost immediately. I put the brakes on those plans for them. I couldn’t think of what ‘help’ I needed. I needed the nightmare the stop and wake up into my old reality, but this wasn’t going to happen so finding things for others to do to be helpful eluded me.

People often look for direction. They want to do something that they would be of some use. People tread lightly. They don’t want to intrude but they have an overwhelming urge to get involved. They simply don’t always know how. This was my perspective just 2 weeks after we received the news.




January 29, 2008
Subject: What you can do to help

You wouldn't believe the outpouring of people… even complete strangers. I have heard countless times, "If there's anything and I mean a.n.y.t.h.i.n.g you need, just let me know." The sincerity, the almost pleading tone to help is so humbling and I am so grateful. I know I have said this myself time and time again only never to be called upon.

I've been thinking about this a great deal because people genuinely do want to help. People are ready and able to help. Friends and family feel so helpless and want to contribute in some way, any way, something, anything to lighten the load. I sense this so completely. There's also this overwhelming respect for privacy. The desire not to intrude, the respect for our space and our need to hunker down with our kids as we figure this out inhibits people from taking action.
"Do I call and check on her?"
"Geez, I don't want to bug her."
"Julia's forthcoming, she'd call and let us know, wouldn't she?"
"Man, I feel like I just gotta do SOMETHING!"
I can hear it loud and clear!
My brother Mike wrote to me recently and told me about a friend who is in treatment for breast cancer. What Mike said was, "The one thing I learned about
cancer patients is that "Let me know if you need my help" doesn't work. You
have to actively BE HELPFUL, because they normally don't ask." I cannot tell you how this resonated with me. Thank you Mike for saying it.

I am at a complete loss for what my/our needs are right now. A complete loss. I'm full of contradictions that leave me feeling a little stuck. For instance, we will need a housekeeper at some point BUT right now doing some of the cleaning myself has been incredibly therapeutic. I caulked the bathroom tub after 9 years! I used a pair of sewing scissor to scrape out the old crud for heaven's sake! It felt so good to do. Do I really need someone, a friend, for instance, to come over every Wednesday to wash the floors? Perhaps, but it feels so wrong that I can't go there. Being available for Reo is another incredible offer. There will come days when someone will have to pick him up from school or drive him and I'm dreading it. I'm dreading that transition for him. It is one more new thing for him to accept and endure. He will because he must, but he's 6 years old. Granted these would be people he loves and adores but there's no getting around the reason for someone else having to get him. This is yet another reminder of how little control we have. It is a lot to ask someone to be on stand-by for the off-chance that they are needed. Plenty of people have offered and I have my list but it weighs heavy.

Food, everyone wants to bring food, which has been SO great!! Cooking for Doc and I is something I normally love and right now it is all I can do to keep the kids fed so having outside food has been great

The other offer we've received a lot is for someone to watch the kids while Doc and I go out and have some quality time together. This is so generous and so amazing and falls completely on deaf ears right now. I’m so sorry! I can't even imagine wanting to do that 6 months from now. Who knows maybe my attitude will change then? I know it’s important to keep the "us" part of our relationship but Doc and I are definitely our best "us" when we are with our children. This time in our lives is so intense and so all consuming and I have a strong sense that I will not regret a single moment of it 5 years from now when it seems like some kind of surreal dream. I could be completely wrong and forgive me if I'm sounding defensive but I feel so connected with Doc on so many levels right now that time alone with him out to dinner seems odd. I described it to a friend today as something like this. Suppose your kid is really sick and has been for some time and you're worried. It's basically all you can think about. You take your kid to the doctor and you know full well that he/she is in great hands. It's the doctor for heaven's sake! So you make ready to get your kid settled in with the doctor and you say, "ok hon, all is well, I'm heading out to grab a little me time..be back in a jiff." Would you really feel better? Would you really have quality time? Would you really be able to let go? Perhaps that isn’t the point. Perhaps the point is simply a tiny little break and change in scenery. Perhaps that would satisfy some. I’m not ready yet.

Nope, despite how tough it is, how grueling, how all consuming, we are sticking close to home, the kids and each other. Again, I recognize this offer in particular is so sincere and so genuine and coming from of place of pure consideration. I'm just letting everyone know where we are in the process. It also doesn't hurt to know that Doc and I are complete home-bodies. I can stay cooped up in this creaky old farmhouse for weeks and be perfectly A. OK!

Regarding the matter of calling me and checking in. PLEASE do! I've said this before but if ever you are inspired to call me, don't hesitate. If I can't talk, I won't. You are all being so tremendous to us. The emails, the wonderful letters and cards, the presents, the phone calls and so forth have already been so helpful. They all matter. The reminders that you're available is so great.

Remember that this process began only 2 weeks ago. 2 weeks ago and already it feels much longer. We have a long, long way to go so loads of opportunity await both you and me.

In the meantime, from the very bottom of our hearts, Thank-you! Like Mike said, "you must be actively helpful." For now, that means your presence, your availability, your listening ears and your wide open warm hearts!
Our love to each and every one of you!
~j




It is fascinating for me to read this email now 16 months later when living with leukemia has become somewhat routine and normal. As a matter of fact, what makes me anxious now is thinking about what will happen when her treatment ends and her body will be left to its own devices! I’ve grown accustomed to the monthly examinations and constant follow-up. There is a great comfort knowing Aria is being monitored so closely. We have everything ‘under control’ and life has resumed to a familiar pace.

Still, when I think back to those early days, weeks and months with people asking for things to do, I find myself in a struggle. On the one hand I can see so clearly the benefit of having people come in and lighten the load by doing simple little chores like dusting, vacuuming, laundering, cooking and so forth. People want to do those things. They want to stop feeling helpless. They want to give me a break and ease the tension that consumes my mind and body. I understand this so fully.

But it’s what’s on the other hand that causes me to struggle. I don’t want to give up those things and I didn’t want to give them up then either. Yes, all those regular piddly household chores were a sort of added burden in those early days, but they were also the only measure of control I had at the time. So much of our lives felt completely out of control. Not in a spiraling chaotic kind of way, but in a way that shattered my sense of security, balance and order. At home I could control how dirty or clean my house was. I could have control over when the laundry got done. It gave me an enormous sense of accomplishment to wash and fold clothes, which was something I was desperate for because like so many people wanting to help in their helplessness, I, too, felt incredibly helpless.

Every day I watched Aria and worried and wondered. Every day for months I wondered ever so briefly if there was something I had done to cause this. Sometimes scrubbing the toilets helped me scrub away those thoughts and flush them to where they belonged. Sometimes vacuuming up dust and dirt helped clean my mind. Sometimes washing the dishes enabled me to cry and mix my tears with the water running down the drain. I didn’t want other people to take those things from me. I needed them. I needed to feel like I could do something, that I was doing something. I needed those activities to reminded me that I was still ‘normal.’ I was forced into a situation that was constantly reminding me of what I had to ‘let go’. Every time I let go, my heart broke, making me feel a little more vulnerable. Likewise, every time I could hang on to something, I felt empowered and as if a little of me was on the mend.

I know I frustrated many people whose offers for help I rejected. At the time I remember thinking that I simply didn’t have the capacity to assign tasks that would be ‘helpful.”
“So and so, could you polish the furniture?”
“You there, could you run to the grocery store?”
“ Hey, I could really use this or that.”

Some people are fashioned this way and know exactly how to delegate duties to satisfy other peoples’ needs to be useful and helpful, as well as take care of their own needs. In many circumstances, I think I’m a rather decent manager. Under these circumstances, however, I was shown that I am not. Crisis does not lend itself to steering a clear way.

People would hear my fatigue and my burn out and it made them uncomfortable. They wanted my suffering and my sorrow to end. They longed to give me a break; something, anything that would break up the monotony of my days. Some people relish having a break by having a massage or going to the Mall or getting lost in a bookstore. That is a rare treat for me and I have to be ‘in the mood.” Offers of this kind were of no interest to me and at the time I wasn’t able to explain why. I didn’t know! I simply felt, “thanks but no thanks.”

When we were adjusting to all of Aria’s new needs, the last thing I could consider was being away from her. The thought of taking some time and having a massage just made me want to wretch, for example. Going to the grocery store enabled me to have a little break and to wander around but I tell you, wandering was hard sometimes. Indeed it was a break, but it reminded me that I felt lost a lot of the time. The things I looked at in a store were so meaningless to me. Suddenly everything took on this label of ‘stuff’ and I began to loathe it. I would feel my heart race with this urgency to get home and be with the kids and Doc. This is what mattered to me. Suddenly not missing a single moment with them held more meaning than I can describe.

I suppose some of this urgency was intertwined with my anxiety over “what if something happened while I was gone?” This thought made it virtually impossible for me to let go. You may wonder, “is it a control issue?” ABSOLUTELY! But allow me to say with clarity and conviction that that must be ok and let me tell you why.

You see, I felt hurt knowing that I was disappointing people by being honest in refusing their help. They felt rejected, annoyed and at times judged me for my decisions. Crisis like this creates a situation that isn’t meant to add insult to injury by creating hurt feelings, but you can see how it happens. Tragedy strikes. Something happens and you are watching a beloved suffer. You have a need to help. You want to help. You offer help. Your help is rejected. Now you feel rejected and hurt and so project your feelings onto the one you wanted to help in the first place. Suddenly that person is controlling, closed off, and unable to let others in. Afterall, all you wanted to do was help! What could be so hard about that? How can they reject my help? How can they reject me?

Let me tell you that it isn’t as simple as you may think. Not only that, it isn’t about you at all! I would never have been able to explain this 16 months ago but with time I think I have a better understanding.

Back then, I felt like I had a grip on a lot of what we had to do. I felt upright. I was moving. I was making decisions. I was speaking in complete sentences. I was feeding and clothing the children. I was laughing and able to tell a few jokes. I seemed relatively ok and for the most part I was and that’s because I was in a survivor’s mode. My world was destroyed when Aria was diagnosed with cancer and more destruction was constantly being threatened by thoughts of her dying. All the things that I had to do and those things that eventually had to get done were so minor compared to the monumental thoughts of what was happening to Aria and how our lives were being redefined before our very eyes.

I knew the laundry would get done. The house would get cleaned. Food would somehow be in the fridge and get cooked up and served. None of those things really mattered to me and so devising a plan for others to do those things was simply beyond me. Interestingly, what happened as a result of other people feeling hurt by my lack of direction and openness left me feeling surprisingly inept. I had to face that I was not able to discern my needs and delegate them so others could feel helpful. I felt repulsed over my need ‘to control” and grieved simultaneously the loss of so much of it. I felt completely surrounded by people looking to give me assistance to face a journey that scared me to death. It was the strangest feeling to be so overwhelmed by so much kindness in helping me get ready and get my footing back again while at the same time feeling completely alone.

I knew I would have to walk this path by myself. I knew I wouldn’t be lonely even though it was a solitary journey. I knew many would wander beside me encouraging me along the way, but I also knew I’d have a lot of time to myself.

And so it has come to pass. I have spent 16 months walking this path. I’ve discovered many on parallel paths and I intersected with many more. I’ve taken detours. I’ve hidden out and hunkered down. I’ve stopped and stepped off the path a time or two but all along people have been with me. They’ve been helping me and supporting me. They’ve been cheering with me and for me. They’ve been encouraging me and reminding me of my strength and smarts.

There is so little that you can do that is really truly helpful. I know you’re reading that and thinking, “Did she just say that there’s nothing I can do that is helpful?” I know that sounds kind of harsh because there’s plenty to do that is helpful. But the truth is that so much of that gets done anyway. To this day, I don’t want people to DO anything for me. I want people to be….to be available to hear me when I need to talk out my stress…to be comfortable just showing up and doing whatever the task of the day is…to be comfortable showing up to do nothing at all….to be comfortable letting me be without feeling the need to find solutions, fix problems or make it all go away…to be compassionate and patient because this journey is not a quick fix. It is long and tedious and harsh. All around me people have moved on with their lives as they should and in some ways we have too and in other ways we haven’t and this is hard….to be trusting that I may not always know my needs but eventually I will….to be spontaneous because sometimes that lightens the load more than anything else can.

I have learned, my friends, that what I need, more than anything you can do for me, is to have you share your presence with me….your thoughts, your prayers, your encouragement, your well wishes, your recognition of others going through something similar from what you have learned from me. These are the sustaining forces that keep me going. I often imagine myself walking along this path with you standing in a meadow tossing petals my way, or waving, or singing me a song that is carried on a gentle breeze. Every fiber of my being absorbs this and is the better for it.

We have learned that somehow our actions are more important that our presence. I’d like to suggest that that isn’t true. Sure we feel good about ourselves when we do something that is helpful for someone else. Indeed this is true. But I would ask, were you truly present doing it?

It has been my experience that the greatest healing has come from others simply being with me, sharing their stories, listening to mine, exchanging a bit of humanity. This is not something we are accustomed to doing and it is certainly not something we are taught to do very well. I have come to believe, however, that isn’t so much what you DO that helps but who you ARE that makes all the difference.