[Background on Anissa Mayhew here or here]
Leave it to the widow to say what no one else will: Prayer and love are great. But they are NOT ENOUGH. Whatever happens with Anissa, and I hope as strongly as you do that the outcome is whatever is best for her, things are NOT going to be okay.
So I’m going to give it to you straight: Send up those winged hopes. But plant roots, too, please: add something like this to your prayers and posts and intentions: "Whatever happens, I will help her family for the long haul." They -- Anissa’s husband and three children -- are going to ACTIVELY need your positive energy (and time and money) for at least the next three years.
I’m not an expert on brain injury, but I can read between the lines of the latest post by Peter Mayhew, Anissa’s husband because I, too, wrote hopeful, factual, evasive updates to hundreds of “friends.” It was one of my many unwanted duties (we are not strong, we are obligated) during the two years my late husband was living with a stage IV cancer. So I can hear it in Peter’s voice: the best outcome is probably NOT going to be something you’re comfortable with. Some likely possibilities: temporary disability with a very, very long recovery, permanent disability, or death. Any of these means a long road of grieving for those that Anissa loves the best (yes, becoming disabled involves grief, too).
I’m sorry. Many of you know her well. I met her just once: I hugged her at BlogHer09. I loved her work. I admired her. I thought, if I were ten years younger, braver, stronger, I could have been doing something similar. A few days ago I told Mr. Fresh about Anissa: I said, she’s on an upward trajectory and she’s just the kind of person you like to see succeed. I was looking forward to working with her more. I still am.
What everyone says is true: that lady has more fight in her pinky finger than all of us put together. But you only get one body.
Yes, Anissa has your love, thousands of you, and if God is on Twitter, he’s seen many thousands of hashtagged prayers on her behalf. I know: it does count. These emotions are yours and real and valid.
Internet prayers are powerful, but they aren’t known for their durability. Not too long ago, you may have tinted your Twitter avatar green in honor of those protesting the elections in Iran; a few short weeks later we were all Michael Jackson, all the time. (I said “we.”) A day or two after the switch, Jessica Gottlieb tweeted (I paraphrase), “Hey, anyone know what’s happening in Iran today? Me neither.”
So I’ll tell you what usually happens in the case of long-term illness or death: people are real good at the beginning. Intense and generous. Widows, and sometimes caregivers, have a huge circle.
For a few weeks.
Then, if you’ve been there, you know: the supporters and care and casseroles disappear. It’s not that people are fickle, but facing something as awful as the loss of a friend (or the loss of a friend’s abilities) is heartbreaking for EVERYONE.
It’s easy to say that you aren’t the closest friends, or that family will help. But saying that creates distance and they can't afford distance from anyone.First of all, family and friends are not enough, even for a superstar like Anissa: the needs of a bereaved family are endless, their pain is hard to share. Second, those people who are closest to the sick person are grieving too and very likely, they have more responsibility and less time than they did before.
It's a long, hard, intense and often lonely path which no one chooses. The journey is not over when the person has healed, or when a surviving spouse remarries. (If you’ve read Anissa’s posts about what she went through with her daughter’s cancer, you’ll know it’s true).
THREE YEARS. Even if you weren’t close. Can you pledge to keep an eye on the Mayhews, no matter what shape their family takes? Can you swear to continue your generosity and outpouring of love even after something else comes up?
Will you pray for the compassion that comes from listening to someone in pain? For the strength to help them when they are weak? For the ability to stay and hold their hand even when you, too, are feeling overcome? Will you read up* on ways to help a grieving family?
Will you understand that full love and respect and unconditional support that Peter will require, no matter what the outcome of this illness? Because his wellbeing is the number one factor in how the children will fare. And he will need more than prayers.
If so, please pray for Anissa. And Peter. And their children, and all the rest of their family. If you do, I promise you will grow and learn from this love because it is great.
* One of my favorites is "What Grieving People Want You to Know" [MS Word document] by Dr. Virginia A. Simpson.
* * * Comments * * *
41 comments:
This is gorgeous. Thank you.
This is so true and something I don't think many people understand unless they've lived it. I lost both of my parents when I was 20 and had to raise my younger brother on top of sorting through all the financials of the situation - most of which was terribly bad. You would think that with orphans there would be an un-ending supply of support. But, that wasn't the case and I learned some very valuable lessons about how to help people who have lost everything. Thanks for writing what some of us have lived.
Peter said it perfectly in his update this morning, this is a marathon not a sprint. That applies to both long-term illness and rehab and the loss of a spouse. And both situations suck.
Sherry
Efrvsnt, Thanks!
Myrna, I'm so sorry for your losses. I personally was very disappointed with the world's responses during my crisis, though there were highlights. Thanks for sharing your thoughts. Yeah, the financials... very hard to talk about! Hugs to you!
Sherry! Yes, I picked that out of his message and wondered how many people might miss it. Sometimes when Gavin was ill I thought the intensity of our hope was part of what kept us from preparing for what was next. But, that's just me.
X
Supa
Hard to read, but know that it is true. I know that people will remember and continue supporting the Mayhew's....
I vow.
You are clearly coming from a place of experience. Thank you for a reminder we need now and might need again. I am not a member of Anissa's family, but do consider her a friend. I will support her, Peter and the kids any way I can.
Oh so very true....I too am...or was...a widow. (How do you put that when you remarry?) Anyways, when I lost my husband in an accident, it was unexpected and tragic-everyone was there every day all day never leaving me and my daughter alone...for about 3 weeks. Then they were gone...there was no one but a select few that stayed available. So I moved on...I had to...I had to find someone who cared...and I did. When I remarried, the friends and family of my late spouse were steaming!! How could I remarry??? Well, how could they leave me (their son's widow) and their grand-daughter to fend for themselves?? So....everyone grieves differently...but yes...Anissa's "people" need to be there for the long haul...no matter what the outcome is.
Thank you for this post....
There aren't words, friend.
I have a VERY realistic outlook on this situation but I am hoping for the best.
People like you and I know the worst happens and when it does it can be mighty hard to face.
The long term support is more vital then possible. I have not done anything yet. I will. Down the road.
This was perfect. xo
"More vital then possible to explain" should have been the sentence.
Perfectly put. Thank you for putting out there what others could not.
I'm speechless. That was graceful and amazing and so important. Thank you for helping me learn and understand.
What a brave, powerful post. It's true, anyone who's suffered a loss or the long-term disability of a loved one knows it. It's very often only *after* the tidal wave of support and warm wishes recedes that the blunt force of the loss is felt. My connection to Anissa is through Twitter and one blogger conference and is tenuous compared to so many others who know and love her, but it doesn't matter. My heart aches for Peter and her kids so yes, I would vow to stay connected in whatever way makes sense for as long as it makes a difference.
Well said! I think that there are people who will be there for the family for the long run. But it won't be near the number whom are rushing to their sides right now. I applaud you for having the gumption to point out what so many of us avoid in times of grief.
I hope every single person who has vowed to pray reads this. Thank you for writing it. And I'm so sorry that you know exactly what you are talking about.
Thank you.
You have just so eloquently flung down the gauntlet for all of us who are completely caught up in the heartbreak/drama/intensity of Anissa's situation-- prayers are important, but they need to have some legs to them. I don't even know what that looks like for someone like me, who has met Anissa once, enjoyed funny Twitter exchanges with her, am praying for her fervently and donated to PayPal BUT live 5 hours away. However it is up to me to figure that out, and if I do indeed care about this family like I say I do... I need to do just that.
Thank you for this.
Thank you so much for the reminder and for speaking the truth: there's so much more involved than just praying or happy thoughts.
This is a great post. As a blogger I met Anissa and I respected her work and I hope people take your post to heart. Personally, this post, and your suggested read, comes at a perfect time, as one of our friend's died suddenly (suicide) and his wife, also our friend, is left behind and I'm worried about her and not sure what to do. I will be reading your site, that's for sure. Thanks.
my Mom has a severe stroke and brain anyurism iN August, we still live it everyday, unless you have been there you have no idea how BAD strokes are, they attack your brain and kill as much as they can. I pray she lives, get REHAB asap and above all has some quality of life.
This is a read steeped in love, honesty, and courage. Thank you for giving this to Anissa and her family, and to us.
I have been following Anissa's story because that's the sort of thing you do when you've been where we have been.
I think the mom blogging community is great at the rally point and good for some time after but you are correct when you point out that whatever the outcome - it's somewhere between years and forever and that will tax even the strongest family and friends, forget about everyone else. And it will be the unlikely ones who step up and shine.
I don't know Anissa but for the things others write about her and the little of her blog that I have read. I could say she is stronger and braver than I have or will ever be, but I wasn't tested in the same ways so the comparison is pointless. We are all stronger and braver than we think if we just allow ourselves to be.
I am so sorry for her husband because I know what it is like to suddenly be alone in a relationship that technically has two people in it still. That is not something I wish for anyone.
I remember meeting you after Anissa, Tanis and I finished our Room of Your Own. And you are right about all of this... They are uncomfortable truths. I hope to be the exception where my dear friend is concerned.
This is a great post. Thank you for sharing your perspective. Very, very, very well done. xoxo
Awesome post. My head is full of words that my hands just can't bear to write.
I am in for the long haul and thank you for writing this post. These words are so true.
well said! I've never met her but i'll never forget her either and if there comes a time or need that i can be of some small help then i'm whenever the time comes!
I wrote in my post today: I’m praying she gets better. And soon.
And, I am. But I know that "better" may well NOT be the Anissa I met at Blissdom in February.
I live in the Atlanta area. I'm not doing much now BUT pray. But if they need me, I can hop in the car and go. Easily. And I will. I'm just waiting to figure out where to go sign up for the marathon part of this journey, regardless of the outcome.
The thing about Anissa is that she touches SO many people that I know that there are lots of people who love her and are already prepared for the long haul. We will support her forever...no matter how long she and her family need us.
Practical comment, based on having a child born in a crisis who is 17 today but the hard times flared at least three times since then including cancer, brain injury after cancer treatments, and now two years into a separation and divorce:
walking with a family after the crisis is hard. What can help is a designated crisis manager friend to organize the long term help. When in crisis, I am too busy with the sick child, now teen to manage the feelings or friend's or their help.
Chronic ills can kill us slowly. I hope that the blogosphere can and will help this family over the long haul. I am not optimistic, though, given my journey. May this be different. I challenge you all.
Ali,
Ah, there's the rub. The question is not whether you love Anissa but whether you will be able to deal with him when he is a completely different person, totally stressed, not interested in the usual things, angry, and sad. And to do this when you yourself are hurting very badly.
As other widowed commenters have pointed out, getting the right support is rare and in some ways, a great chance for new friends to step in. Many of us have experienced near-complete turnover in our friendships. The same is true of those who caregive a loved one for an extended period.
I'm not saying you won't be there for them -- just that there's no room for complacency.
When a friend's world is crushed, you can assume that everything you know about them will change, too. It takes a tough friend to stick through with that, very mature, able to understand their own emotions and never judge the person experiencing complicated grief, while IN grief.
IMHO, a wonderful challenge of love, but a very different one from that of being friends with their partner.
I'm proud to be another point of view in the support Anissa and her family are receiving and I cross my fingers that even 10% keep in touch by 2 years from today. That would be HUGE.
X
Supa
As a widow of 8 months today, I can say that you so speak the truth.
And it saddens me that anyone has to be told to support someone in grief , but they have to be told, because until they walk in our shoes, they will never, ever understand.....
Thank you.
i was thinking this morning, after i read peters post, that i was going to try to do something later. for the family. when they really and truly need it.
well said woman! as usual!
I have a close friend who suffered a traumatic brain injury four years ago and it took her about two years to get where she is now. And where she is now is simply not the same as where she was before her accident. She cannot walk without a cane, she cannot find full time work (she was a director in her company), she cannot run races for charity and do the five million other things she was great at.
It was a long recovery, relearning everything, from eating, to speaking, to walking. Her eyes don't have the sparkle they once had and although she still thinks quickly on her feet, you know that she's not all there anymore. It is extremely sad but her true friends have stood by her the whole time.
I too and a little wary about the prognosis for Anissa and I know how hard the road ahead is. Of course I hope for the best and am glued to the twitterverse through all this.
This post reminds me of the experience of a dear friend who had moved to a different city and did not yet have a circle of friends to turn to when she developed a debilitating illness. She and her family had been visiting a few churches, trying to find the right fit for them.
The Episcopals said, "We'll pray for you." The Mennonites brought food, scrubbed her kitchen floor, did her laundry, and drove her kids to school.
Guess which church they joined.
An excellent story to illustrate the point, Alicia.
Prayers are nice, but it's elbow grease that wins the day in the end.
Yeah, that's one of the real contradictions: everyone wants to help with the emotions, which can't really be fixed. But a great part of surviving grief is doing the day to day chores that keep us, literally, alive.
Somehow it's not satisfying for people to "help" this way, or they don't know how much of a difference it makes (and it's hard to ask for, too... I had a hard time admitting I couldn't handle "things").
Alicia, this is a great story and I will share it with others!
Bless you!
X
Supa
You are so right that it takes more than prayer, it takes more than twitter hashtags and blog posts. But, those things are so amazingly helpful to go back to on bad days. When I am extremely down, I can go back and see all the love that was shown for me. I know Peter is already gathering strength from these things.
I feel very confident in the support the Mayhews are going to get for a long, long time. Not only can I personally pledge my own life-long support, but I know that Anissa's close friends will be there for the family as well. I can attest to this, since we share a group of close friends and they are all still there for me. Have I changed? Most definitely. But they don't care. The silver lining to all that the Mayhews have been through since 2005 is that they have a very well-oiled support group in place. Her friends, be they internet or oncology in origin, are up for the challenge.
In that way, she is luckier than most.
Friends,
I am so glad to hear assurances that Anissa's family has so many people looking after them.
Please know that my intention was not to criticize the amazing support you all are giving the Mayhews. I even do think prayers make a difference, and Heather, going over condolence notes etc. was a huge source of comfort for me, too, after my loss.
My goal was to educate the 80% of folks about how the Mayhews' needs might unfold and how important sustained work is to their wellbeing, based on my experience as a widowed parent of a young child.
If I sounded like I was saying something else, or seemed cranky, it may have been my envy showing through, or just bad communication on my part. For those, I apologize.
I think what this community is doing is wonderful. As much as I felt my world failed me in my grief, I am also grateful for the help I received, and hope to pass on what worked and didn't for me.
(I suppose I'm also modeling for you how grieving people often behave: needy and demanding and picky and mean, and desperate, all at the same time. Not always fun to be around.)
Above all, I'm most grateful to be on the giving side, if in a minor way, at this stage in my life.
Kudos, prayers, and hugs from the bottom of my heart.
Supa
This is an excellent post. So well written and full of excellent information. I'll be in contact soon!
Thank you for this post. I don't know the family but all that you say is true and people need to hear it.
I was also widowed young, with children. I learned so much about people, both good and bad but that learning enabled me to go on to help many others, both in my capacity as director of an adoption agency (adopted kids and adoptive families also deal with loss) and as a life coach who works with the bereaved.
Thanks for this site and my prayers for this family as well.
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