Friday, July 06, 2007

Clarify (& Justify?)

Cancer isn't fun. It's rotten, mean and sneaky.

Cancer may seem horrible - and it is on many levels - but in one of those insane ironies it's also been an odd kind of blessing. It's forced us to see how lucky we have been (and continue to be) in our lives. Things are not dire for us - we are among the luckiest people in the world. We have a good home, indoor plumbing, hot water, all the food we could want and things to amuse us (like knitting!) We also have each other - and the fact that Gerry & I found each other is sort of a minor miracle. But we did, and we're lucky.

When my brother died a few years ago at age 44 I said to his wife that it was tragic, but not a tragedy. The tragedy would have been if he hadn't met her, and they hadn't had 14 good years together. We don't know how this will end, but we're hopeful that by preparing for the worst & hoping for the best, we will find the best in both of us!

If we didn't have a good attitude and a good sense of humor
(which, thank heaven, we both have!) we'd be totally lost now. Our jokes and laughter are like the white stones we can follow through this dark and scary forest of cancer back to some kind of normalcy.

It's good to note that Gerry is LIGHT YEARS better than he was in March when we had no idea what he had. For a few years Gerry has also suffered with ulceritic colitis, which tends to rear it's ugly head every now and then, sporadically. At the onset of this disease Gerry was in the middle of a several-months-long bout of UC, and he was so exhausted, tired & in so much pain that we both felt rather hopeless. This was BEFORE we knew he had cancer. We just knew SOMETHING was seriously wrong.

One of the drug therapies that's been helpful for MM is a combination of Deximethezone & Thalidimde. This cocktail has not only been helpful with the MM, it's also been working wonders with his ulceritic colitis. A colonoscopy in April showed how well it has been working, and he's better in that regard than he's been in a LONG time!

Not being able to get up and down stairs quickly married to ulceritic colitis is a very hard thing to live with and creates - quite often - episodes that are painfully embarassing as well as just plain painful.

Right now Gerry's trying to wrap his mind around the fact that he's lost so much of his bone density and some of the changes are irreversible (he was never a tall man, but he's 3" shorter than he was in February.) I'm trying to keep him focused on FUTURE - but he has to come to terms with what he feels he's lost so far before he can move ahead.

Part of the focus on the future - as I tried to say in my last blog post (I think I was a bit incoherent) - is going ahead with dividing our kitchen into a kitchen / bathroom & laundry area. As I wrote earlier, I have very mixed feelings about this. Just who do I think I am, going ahead with this? Even though it's going to be a relatively inexpensive redo (as these things go), shouldn't we put this money entirely into recovery-related expenses?

This email came in today, and I'm thinking I should address this here as it's likely that others feel the same way:

I was just sent a link to your regular blog where you discuss remodeling your kitchen and bath.

I was under the impression that your financial needs were dire in relation to your husband's condition. I must say that I am now very uncomfortable at having made a donation to you under the circumstances.

I can definitely understand these feelings. I haven't hidden anything, I've been very up front with what we're going through now (and all of the other little incidentals of our life, like the move, the kids settling in, the effect of this on my work and, of course, adding the bathroom...)

But the email hurt a bit - the sense was that the author thought we are trying to get away with something, and that's the most stinging thing of all. Actually, it didn't sting, it felt like a sock in the gut. Of course I returned her donation immediately.

I'm still sorting out my feelings on this whole chapter in our lives. My gratitude to all of you who have sent a kind note, a small gift, a donation, or a story of your own battle with cancer is boundless. I'm not being as quick as I'd like to be with the personal notes to those of you who have written, and I apologize for that. Life is - well, busy. It is for everyone.

But here's what I wrote back to the emailer. Perhaps it will be helpful to those of you who may have the same concern that she had:
We have no bathroom on the first floor, which makes Gerry a virtual prisoner of the second floor of our home on many days. The small amount of money for doing this (very small) renovation has been set aside since we purchased our home this past February. If you have read my blog you will see that I, too, have mixed feelings about going ahead with this at this time.

With Gerry's condition it's practically impossible for him to walk up and down stairs. The renovation is more along the lines of making that portion of our home handicapped-friendly than a cosmetic change because we want a new kitchen. We don't - we'd be more than happy to just keep things the way they are. But then we wouldn't see Gerry most of the time, and he wouldn't see anyone unless they came upstairs to visit him.

Our kitchen area is large, and rather unfinished. We can divide the space and add a toilet & bring the laundry up from the basement. This will allow Gerry to be part of the family and stay on the ground floor during the day, and I will have less running up and down stairs as I manage all of the other tasks I need to do.

Gerry hasn't worked since Feb due to his illness. I've canceled several of my teaching engagements and have canceled some writing & book work in order to take care of him and drive him to doctor's appointments (a full time job.) We're living on savings, which have pretty much become depleted.

We have been told by the University of Minnesota and the Mayo clinic that Gerry will most likely die from this disease, probably in 1-3 years. It is likely that he will need constant care during much of that time.

We prefer to hold out more hope that in the next few years there will be the same kind of strides in Multiple Myeloma as there has been in other forms of cancer, and that Gerry will be in the 10% of MM patients who beat the odds. At any rate, we'd like to spend the next 1-3 years with the family together as much as possible, and with Gerry as comfortable and stress-free as possible.
So, in case you were wondering, this is why we're adding a bathroom to the ground floor. If anyone feels cheated in any way - that our circumstances aren't as 'dire' as you thought they were - please let me know and I will be MORE than happy to fully refund anything we've received from you.

I'm off now to Comotown, where I'm taking the kids to ride the rides with friends.

78 Comments:

Anonymous said...

Annie, you have such a good attitude. I only wish you all the best. Sending you some small amount of financial help is a way of saying hello and take care. Like taking you out for dinner. Take care.

July 06, 2007 1:04 PM  
Joy said...

Oh Annie do I EVER get it!!! I'm partially disabled (my knees were ruined in an accident awhile back) and getting up and down stairs is extremely painful. I'm staying in a house with only one bathroom - upstairs. I often have to make the same choices as your Gerry - isolate upstairs near the loo or be downstairs with the people, the computer and pretty much everything else and risk not making it upstairs in time.

If you need people to compensate for what you've returned in donations, say so. I can probably manage a few more bucks.

July 06, 2007 1:05 PM  
Anonymous said...

As I remember it, you set up the fund because your readers were ASKING how they could help. You've made it very clear that anything above the purchase price of the pattern was a DONATION.

I'd hate to be the recipient of anything someone who doesn't understand the meaning of GIFT would knit. The pressure to appreciate it enough would just be too much for me.

You're far more gracious about this than I might be.

July 06, 2007 1:10 PM  
Brenda said...

Brava! This is no shortage of people who are willing to comment on how you're living your life. You have been very forthright in describing the necessity rather than the whimsicality of making structural changes in your house. Please continue to make your decisions with Gerry and not with an eye to what others think.

July 06, 2007 1:10 PM  
Kiyomi said...

I'm currently dealing with an aging father and I sympathize greatly. It seems to me that there may come a time when Gerry can no longer negotiate the stairs or deal with a bathtub, so a first floor bathroom with shower makes SO much sense. And it's better to do the renovation now, before it becomes a dire situation. I'm grateful that my parents moved into a single story house that has a bathroom with a walk-in shower as it's made it possible for them to continue to live independently. Unfortunately, even at times when finances are strapped, there are some things that you just HAVE to do, and it seems to me that your kitchen/bathroom renovation is one of those things. Take care, Annie.

July 06, 2007 1:15 PM  
Spike said...

Dittos re: your grace under pressure. I'm a skimmer, so I hadn't seen your ambivalence regarding the remodel.

However, you've made it astoundingly clear that this IS a part of the recovery-related expenses. Just as someone who becomes wheelchair bound MUST have ramps built, doorways widened, and rooms re-purposed. This is not for fun; this is not "Send Annie a new house just because" scheme.

Off to order the convertible pattern, and do what I can that way.

July 06, 2007 1:16 PM  
marie in florida said...

get that bathroom
is's just plain good sense.

July 06, 2007 1:18 PM  
Anonymous said...

I can only echo the previous comments, you are too gracious. You owe no one an explaination. If they donated to your fund great. They have no say in what you deem necessary to help your family adjust to a very difficult situation.

I like to thank you for all that I have learned from your blog and that includes so much more than knitting help. So thanks again for showing us how to live with grace and humor.

Catherine

July 06, 2007 1:19 PM  
PICAdrienne said...

I understood when I donated that part would go for a remodel, to improve the quality of your lives as a family. Not having a bathroom downstairs, well, that is a pain at the best of times. But when climbing stairs is an issue (or you have kids who play outside) it becomes a real issue.

You have been up front, and didn't deserve the comment.

PICAdrienne (aka momtester)

July 06, 2007 1:24 PM  
Hockey Mom said...

Well written Annie. You have shown a great deal of grace in dealing with everything that has been thrown at y'all.

I hope to donate a small amount each month. You're in my prayers, every one of you.

July 06, 2007 1:25 PM  
Amie said...

Ditto. It's a necessity to have Gerry comfortable, mentally and physically, and that includes a bathroom on the first floor. If you were building another Taj Mahal, I could see the writers point of view. But really, it's a bathroom which means more independence for Gerry. And as far as I'm concerned, you can't separate the physical and emotional needs of a cancer patient.

Keep doin' what you're doing Annie.

July 06, 2007 1:26 PM  
Annie C said...

I echo what everyone else has said. Do what you need to do to make your lives easier and more enjoyable. Just because you have sudden unexpected expenses due to illness, that doesn't mean you should eliminate all the money you spend on anything else besides absolute necessities and put it towards covering the costs. You still have to live and enjoy life.

I've been sick and haven't worked for a while now. I managed to finish my Master's degree during that time and got a nice chunk of money in graduation gifts. I was torn - should I save it and be practical or treat myself to some new clothes, books, and yarn? Well, I didn't go crazy but I spent a lot of it. The way my mom put it, knitting is one of the things I can do now that doesn't make me feel sick and that I enjoy so I shouldn't feel guilty about buying yarn (within reason of course!), even if it means my parents end up helping me out with finances here and there until I'm doing better.

I know this is long, but the point is, just because someone is sick doesn't mean you should give up the things that nurture your soul and spirit and make your life a bit easier and happier. Build yourselves that bathroom/kitchen/laundry area (and go with the experienced contractor to save yourselves the worry). And don't you feel guilty for a second.

July 06, 2007 1:42 PM  
Lyndsey-Jane said...

I would say that installing a downstairs bathroom for Gerry is a medical expense, I suffer from ME and IBS so I sort of understand the need to get to the bathroom but your obdy just not moving quick enough. It is important for Gerry to be around friends and family and being stuck on the second floor because thats where the bathroom is, is proabably quite lonely espif he can hear children downtairs etc. To me the bathroom installment is just what you should be doing for him. There is no need to feel guilty at all. You need to do what these things and some people will always object - maybe they have never had to nurse someone who is seriously ill before and couldn't see how important this is to Gerry and the family. My thoughts are with you.

July 06, 2007 1:54 PM  
Arianne said...

I don't think you should have to justify yourself this way...
It's clear to your regular blog readers that what you're doing is the best course of action for the family and the best way to cope with Gerry's living conditions and illness. And it's been clear from the outset that this is what you planned on doing.
The post you made that said that you would use the money donated on what you as a family felt was best is more than enough justification.

Not all of us are wondering why you're doing this refit. Some of us understand completely.

Those of your readers who've donated should accept and understand this and know that the money is not theirs anymore. It's going to help a very special woman and her very speical husband and family get through a very difficult time. That should be enough. And I think most of us feel that way.

All my best.

July 06, 2007 1:58 PM  
mary said...

Oh for pete's sake, I just can't believe some people. Get the bathroom. And as was earlier suggested, go with the experienced contractor. You don't need any other hassles right now.

July 06, 2007 2:00 PM  
Paula said...

Annie, I echo the above in stating that you have handled this so very gracefully. Bravo!

When my daughter had a bmt 18 years ago, she had to be in a flow room, where we all suited up like spacemen to visit her. Even though we stayed in waiting rooms at the hospital (6 weeks of hell but often nurses let us shower in empty rooms and various churches came to offer family members relief and a comfy bed) our costs were astronomical. I cannot imagine the costs now with hotels, etc.

I thank our lucky stars that we had a downstairs bathroom when my mother was fighting ovarian cancer. Its not just for pain relief of the stairs, its basic human dignity. My mother could not climb stairs at all, and the prospect of the alternative (a portable toilet or diapers) was horrendous. Unacceptable.

And finally, when I gave my paltry gift donation - I gave it without strings. NO STRINGS ATTACHED. If you need to use it to buy a latte, take a kid to the park, rent a movie or 10, or put in a gold freakin' sink - if thats what you need - DO IT. And the same goes for each and every gift I may be able to send. Use as you see fit.
You don't ever need to explain or justify.

July 06, 2007 2:05 PM  
AmyP said...

It's a shame that someone gave you money to help you, and then read your blog - why?
Besides which, like Paula, I gave my tiny donation for you to use as you wished.
As a disabled person (and the daughter and grand-daughter of disabled people) I understand the importance of a downstairs toilet. It is a necessity if you have the room.

July 06, 2007 2:07 PM  
Channon said...

It's nice that not everyone has had to work through a health crisis with a family member, and thus, can't relate to the importance of your bathroom.

Your sense of humor and your ability to smile through the rain is inspiring. I do hope you have some friends with whom you can rage at the world and cry your eyes out though, once in a while.

July 06, 2007 2:18 PM  
Maria said...

My husband and I donate to a lot of causes, because we've been blessed. We've always given with NO strings attached. A gift is a gift, and the recipient has the right to do what they want with it. Please, don't let comments like that bother you. Live your life!

July 06, 2007 2:26 PM  
fritzl said...

Sometimes life sucks, and you get what you get. It's how you deal with it that's meaningful. Your graciousness and courage in dealing with such a terrible disease, gives all of us hope.

I consider it an honor to be able to help someone, even at a small level. In a very strange way, you're doing us a favor by allowing us to help you out.

So, get the bathroom, ignore the twerp. He/she has no idea of what it is to deal with a major health crisis. And enjoy your kids and Gerry.

July 06, 2007 2:50 PM  
mwknitter said...

I apologize for the insensitivity of the woman who sent you that email. Had she thought for a few minutes before hitting send, she probably would've realized that a first floor bathroom is a necessity in your situation. I have rheumatoid arthritis & we are going to build an addition with a family room, bathroom & laundry room on the back of our house (unfortunately we have fairly small rooms on our first floor). My pain is a mere fraction of what Gerry is suffering but still, on bad days (which are becoming more common than I like to admit), I am a recluse on the 2nd floor - it is just too painful to walk up & down the stairs with arthritic knees & we too have only one bathroom on the 2nd floor. I do have a TV & my computer in the guest room but still it feels so isolating. And, of course, the kitchen is downstairs & the laundry in the basement. What I cannot understand is why someone would donate to your family & then not even stop for a few seconds to ask herself why you might need to remodel your house. Why she would instantly jump to such an uncharitable conclusion. Ignore her. There are too many of us who empathize with your predicament & want to help. I know her words must have stung but just think of how small her world must be for her to react like that & I think you'll agree that it is you who should pity her.

July 06, 2007 3:01 PM  
Janet MF said...

I have a story for you. One of my husband's employees has MS. A few years back he had a bad bout of flu, which totally sapped his strength, landed him in hospital and meant that he needed a wheelchair permanently. He wasn't allowed home until his house was made more accessible for him - this involved installing pulleys etc, bathroom conversion amongst a lot of other changes. No-one had really faced this earlier - it wasn't going to happen. He was in hospital for 5 precious months, which could have been spent at home - well 3 of them could.

Do forward plan. Get the bathroom!!!! Quality of life is extremely important for Gerry and the whole family right now. If people don't understand this they're from another planet.

Stay positive.

Janet MF

July 06, 2007 3:05 PM  
gemma said...

Dear Family,
Hope always, and make life as comfortable and stress free on the home front as circumstances allow. Hugs and all best wishes, and go for the renovations. Something that lifts a little stress/worry is worth so much more than money, especially now. When Gerry is well come to Australia, and bake the ache out of him, lying on a sandy beach.

July 06, 2007 4:45 PM  
Ruth (Frances) said...

I will be donating again to make up for the cynical person who regretted donating. My daughter's house has steep front stairs and my husband will not be able to manage them as his illness progresses, so I completely understand Gerry's need for the downstairs bathroom. Do what you need to do, take care of yourself, and ignore those fortunate enough not to know what it is like to deal with a health crisis.

July 06, 2007 4:54 PM  
ellen said...

I'm sorry that in addition to the difficult plans you must make for your future that you also are being called upon to defend your choices. Make your best choices, do what you must do. and turn your back on anyone who makes it harder.

July 06, 2007 5:08 PM  
Penny said...

oh annie + gerry, max, hannah ...

{HUGS}

I never understood what stairs could do as I grew up in a ranch-style until I met my husband and went to his parents house and moved into my apt on the 7th floor (my elevator was slow so sometimes i walked, when i could) ... i'm sitting here with tears at some people just don't get it. let me see what i can do this time around.

i know our $ goes to a VERY VERY AWESOME cause, but are there any orgs you would like some $ donated to for MM research? that individual might not give to you but might give there. I see three links on the we/i love annie site.. but am not sure if that Foundation or Mayo or U of MN is where you'd prefer $ to go...

i'm not going to say more as i just get too worked up at people's comments, so i will leave with a {hug}

July 06, 2007 5:28 PM  
stranger said...

I know how little things like that email you received can just eat at you, but please don't let it. She's an idiot. Next.

You have a bigger battle to wage.

July 06, 2007 5:38 PM  
Anonymous said...

NO ONE HAS THE RIGHT TO JUDGE YOU! Obviously, this person has not had such stressful circumstances to deal with or he/she would not have said such a thing.

It's amazing how a little comment from someone can either make or break your day. I know it hurt, but please remember THEIR COMMENT WAS ABOUT WHO THEY ARE, NOT ABOUT WHO YOU ARE!! As Danny Thomas once said to his daughter Marlo, "put blinders on and run your own race".

I hope this person finds it in their heart to apologize for the insensitive and callous remarks.
My heart goes out to you. You see, my husband only has a few weeks (perhaps days) to live. He is dying of lung and brain cancer. I have filled an ocean with my tears. So I really, really know how stressful and painful this time is for you.

You have helped me through your blog. I have copied some of your words into my journal and it has helped so much. I fantasize about the time I can get back to knitting (some of your patterns, I hope). In the meantime, I read your blog in the spare moments for laughter, comfort and yes, more tears.

Please, please don't let the negaholics get to you. Let it go as fast as possible and move forward. Run your own race.

My love and prayers to you and your family

Patty Ann

July 06, 2007 5:43 PM  
Kathleen C. said...

Annie,
I have to warn you (you probably already realize) that the word of your families' challenge is spreading. And many people who did not know much about you, or read your blog, before... will now.
Those of us who have been here for a while have read about the difficult decisions and choices you have had to make. But the new visitors have not. They only know what they're reading... right here, right now.
I know this was painful, but you did the right thing! You responded honestly and openly about the whys and wherefores. With grace and dignity. And in doing so have helped to open the eyes and hearts of many more people.
You may be one who has a need, but we are the ones who are being helped.
And you may be assured that what is given by us is given freely with no strings attached. I'm with Paula... buy a latte, rent a movie... whatever you need. but I don't recommend the gold sink. Too hard to clean.

July 06, 2007 6:04 PM  
martha marques said...

Dear Annie (and Gerry),
I have had both Crohns Disease (a lot like UC) and Cancer and the remodel that will enable the family to be all in one spot is really essential to making to most of the time that you all have together. During the two years of my battle with cancer many days all that I could do was to be there on the couch, but at least I was consistently there on the couch when our daughter got home from school, or my husband came home for lunch. Please try not to take other people's reactions to your situation to heart. People's responses to cancer, money, death, marriage, and yes even kitchen remodels have so much to do with them.....and so very little to do with you.

July 06, 2007 6:18 PM  
smittnwithknittn said...

As if you don't have enough on your plate! I have always felt if you are giving something with conditions attached then you really aren't giving at all. Don't feel guilty, there will always be someone to judge anything you do. If this person had read your blog for a while, there wouldn't have been a question about the money. God Bless the cheerful giver!!

Hang in there!!!

July 06, 2007 6:19 PM  
indigo warrior said...

!@*& 'em! Who cares what they think? Sometimes I feel rather painfully like I'm eavesdropping when I read you blog.

You were much kinder and much more generous with that monkey than I'd ever be!

July 06, 2007 6:41 PM  
Country Mouse said...

Annie, I think you should put a link to this post prominently in your sidebar, as an easy way to familiarize people who have heard part of your story elsewhere with your family's needs in this regard.

What I don't think your emailer understood is that this is not a "renovation" of a bathroom and kitchen — you're not trying to make things prettier. This is an installation of a bathroom in a place accessible to Gerry. Gerry's disability has increased your expenses in all other areas, making it harder to make ends meet; but this same disability is what has moved the remodel from "needed" to "vital" status.

I'm wishing you all the best.

July 06, 2007 6:52 PM  
Debbie said...

Get the bathroom! Gerry needs to spend as much time as he can with the rest of the family and not feel isolated or the family feel isolated from him. Plus, there will come a time that climbing up and down a flight of stairs even once during the day will be a great strain on his endurance.

I work in the health care field and this is not an unusual thing to have to consider along with ramps, widening door frames, turning living rooms into bedrooms, etc. We give families professional advise all the time on what is needed for their family member to be safe at home.

July 06, 2007 7:20 PM  
annie said...

You guys are the best - really!

And I truly do believe that the woman who wrote didn't understand that this wasn't a cosmetic redo. But if she felt that way, then it's likely that someone else does, too, which is why I thought it was good to address it head on.

Debbie said it best - it really is a safety issue. Or, as Gerry says, "Having the runs when you can't walk is no picnic."

There - it's out in the open!

July 06, 2007 7:37 PM  
Gina said...

If you want to go get a Pac-man game and set it up in the livingroom...do it. If you want to buy champagne and caviar and pink feather mules...buy them, we all give you our blessing. Enjoy yourselves, beautiful family and hit delete when a tone turns nasty. Hugs.

July 06, 2007 7:48 PM  
Judith in Ottawa said...

Sweetie, we totally get it. I hope the lightness of positivity can help lift the weight of that comment. She didn't mean to be hurtful, just wasn't a long-time reader. Maybe she'll keep reading and understand.

July 06, 2007 8:11 PM  
Myra said...

It breaks my heart that you were given any reason to feel the need to justify yourself in any way. What the hell is wrong with people? All we ask of you is that you, Gerri and the kids have the best quality of life possible.
Sheesh.

July 06, 2007 8:22 PM  
Anonymous said...

People are unbelievable in their kindness and cruelty. Keep the filter of comman sense and good humor firmly in place. LOVE and PEACE-only.Marsha

July 06, 2007 8:50 PM  
Leslie said...

Dearest Annie,

I've never commented before, but I want to repeat what others have said--my tiny donation came with no strings attached, and however you choose to use it, I hope it brings a bit of happiness to your lovely family. My best to you, Gerry, and the children.

July 06, 2007 9:37 PM  
Deborah said...

Hey, Annie: My donation went to the We Love Annie site, and it's not as large as I wish but it's also not the last I'll kick over your way when I can. You can buy bonbons with it, or water balloons, or a bit of childcare, or the valve for the inside of a toilet tank, or whatever makes your days better. Or even a few minutes at a time. You all rock. Keep on rocking. Deb Robson

July 06, 2007 9:51 PM  
Karin said...

I do not understand how someone can judge you and your situation unless they have walked in your shoes. You answered the email very diplomatically. On top of everything else you have to deal with, you don't need to feel as if you are trying to get away with something. Hang in there.

Karin

July 06, 2007 10:04 PM  
Corvi said...

Oh, dear. That is a blow, to be taken so wrongly. I know you are doing your very damned best and and I'm glad I was able to make a small donation. We are behind you and your family 100%. Kate Smith, Fayetteville, NC

July 06, 2007 10:07 PM  
KellyD said...

Annie, We love you and understand. Get the bathroom without guilt. I wish whomever it was had read more closely. The whole comment certainly adds to the stress you must already have in your life. I have really bad knees thanks to my stent in the Army and repelling out of helicoptors. Stairs hurt.

July 06, 2007 10:19 PM  
Anonymous said...

Annie, I donated because LIFE costs money: food, childcare, gas for your car, and whatever else flies in your path. When a person donates money, it is not up to the giver to dictate how the receiver uses the funds. My grandma died after a hellishly long 10 years with Alzheimers and we kept her at home as long as we could. I remember so well that LIFE costs money...

And honestly, I hope you use the funds to do something frivolous, with the hubby, by yourself, or with the kids. Every minute is precious.

Much love to you all, from our house to yours....

July 06, 2007 10:46 PM  
knitncycle said...

Wow. That is so disappointing for someone to write such a judgmental email. Had they taken the time to read through your blog, they would have realized that reason for this was to accomodate Gerry and help the entire family be together. I can't think of anything that you guys could need more at a time like this. Clearly, this isn't cosmetic just as handicapped accessible accomodations aren't cosmetic. BTW, if you wanted to spend my donation on basket weaving supplies or lipgloss, that's fine with me! I gave, as I'm sure 99% of everyone else did, with no strings at all. Hang in there Annie!

July 06, 2007 10:56 PM  
Kelly said...

True gifts are given without attachment to the recipient's response. A monetary donation (in this case) is a gift, and the giver should let go of any concern for how/where/when it will be spent, and instead focus on the blessing of their position - one that allows them to give. If a potential giver cannot do this, then they should rethink their desire to "give".

I am so sorry that you have been confronted in such a manner. Thank you for taking the opportunity to educate all of us - not just about your family's experience, but about graciousness, love and family, as well.

July 06, 2007 11:31 PM  
dragon knitter said...

don't you even DARE think to refund my money (it's not mine anymore anyway, lol). i understand doing things to meet the needs you have,and worrying about making ends meet. things are awful enough without that kind of negative thinking. oy

July 06, 2007 11:52 PM  
Anonymous said...

Annie.... my comment in Latin.... illigitimus noncarbonrubdum (sp?)

Tina Rose

July 07, 2007 12:35 AM  
Anonymous said...

In English.... "don't let the bas*a*ds get you down!"

TR

PS**shaking head** some people's children! Hopefully, she's not raising children with that pernicious attitude towards others.

July 07, 2007 12:39 AM  
Marsha said...

I'm sure whomever the person was that complained is duly shamed by her comments to you. I do think it's a good idea to post this to the sidebar because someone not knowing the whole story could get the wrong idea. I too, gave with no strings attached just because your story touched me - and I don't know you. It's one of those "there but by the grace of God go I" situations - in other words - it could just as easily happen to any one of us, but it didn't - it happened to your family.

July 07, 2007 1:07 AM  
Evie said...

I'm hoping that person was just having a really bad day and said things she might not usually say and has since realized she made a mistake. I'm sorry you had to be on the receiving end when your emotions are stretched already.

I feel totally comfortable with my donation and wish I could have given more and will do so as often as I can.

I think you should definitely move forward with the remodeling project to give you, Gerry, your the kids and friends the ability to spend as much time as possible around each other.

As always your family is in my thoughts and I thank you for sharing your thoughts and experiences so openly with us. I think you are probably giving voice to things that many people need to hear to help them through their own journeys!

July 07, 2007 1:39 AM  
Anonymous said...

Annie... one last thought! (yeah right LOL)

As I mentioned in my e-mail to you. What I sent you was a micron of what was done for me during my treatment and recovery from cancer and eventual subsequent job loss.

When I was in greatest need I received a multitude of blessings from very unexpected sources (not only monetary). There was no way that I could pay back all that was done for me. The only thing I can do is to pay it forward. And thus like the Sea of Galalee I will florish because not only do I receive but I give unlike the Dead Sea which only has inlets (receives) and no outlets (gives) thus will not support life.

It saddens me that the aforementioned giver has done this to herself. Her tight closed fist will not allow blessings to occur in her life, nor will she recognize them when they do.

Tina Rose

P S - part of the random letters in the verification form the word knit! ;-)

July 07, 2007 2:22 AM  
Vanessa said...

I feel that I'm just echoing what everyone above has said by reassuring you that the small amount I've been able to contribute was a G-I-F-T.
In the coming months, there are things you will need that might seem as frivolous to someone on the outside looking in, but they are necessities to you. The bathroom/kitchen/laundry room remodel is one of those things. Escaping away to a cafe for a latte and 30 minutes of solitude may be one of those things. Anything to help your family maintain a sense of normalcy at this time is a necessity.

I'm looking forward to seeing you in Sacramento and will be more than happy to treat you to a pub crawl at that time.

Warmest wishes,
Vanessa

July 07, 2007 4:32 AM  
Anonymous said...

Annie,
My mom has mantle cell lymphoma and is in the process right now of preparing for a bone marrow transplant. Our family has been living with cancer for years now as this is her second form of cancer. My thoughts and prayers are with you and your family. People who have not been through this have no idea the toll it takes on the person with cancer, but also in so many shocking, painful, amazing ways on the care taker. It is so hard to be the strength, the one to keep everyone focused and positive, to take care of everyone. You are doing a great job. Don't feel that you have to justify your decisions to anyone. You are obviously making them with your family in mind. I will continue to pray for you and please know that there is someone out there who knows intimately what you as a care taker are going through.
Jennifer

July 07, 2007 5:18 AM  
Tana said...

I think the renovations you describe will also increase the value of your house. Elderly people who want to continue to be independent need houses with everything on the same floor. Kitchen and bathroom renovations generally are worth the investment when the house is sold (you get your money back). In this case, though, I think you may get more than your money back because it isn't just a kitchen/bathroom thing - it's making the house far more user friendly for people who want to be independent as long as possible. I think doing the renovation is an extremely good investment. Hang in there, Annie!

Tana
www.tanapageler.com/life

July 07, 2007 7:32 AM  
Joan said...

Dear Annie,
I, for one, and HAPPY to be in a position to offer you and your family some small help in this difficult time. You have been totally upfront about all aspects of what your family is facing, you've made it crystal clear why you need a first floor bathroom, and you haven't so much as asked for donations as responded to requests from friends who HAVE asked, "What can we do to help?" Of course, you must have a bathroom on the first floor. And, with budding teenagers, two bathrooms (or more) are absolutely necessary. I've been there, and without a person in the family with a major illness. Anyway, please take my small contributions with blessings, and know that when I contribute I trust to person to whom I give to use the gift as she thinks best.
Joan Wells

July 07, 2007 8:20 AM  
Anonymous said...

I haven't made a contribution (yet) -- but I feel compelled to answer the woman who questioned your house renovation plan.

Clearly she's never had a loved one with a serious illness living in her home. It is physically grueling, emotionally devastating, and EXPENSIVE. Anything that can be done to make the home safer for the loved one, and to make it easier for everyone to spend time together, has to be done. And frankly, to have the person going up and down stairs is an additional risk that really shouldn't be taken.

People are donating to you and your family because they adore you, not because you have your hand out saying, "Gimme." This is what members of a family -- related by blood or friendship or both -- do: they help each other out.

Anyone who questions your decisions right now clearly needs a reality check.

My best to your family.

July 07, 2007 9:41 AM  
shoeboots said...

Wow. Maybe that person will do a little research next time before opening the wallet if they feel so strongly about such things. Seriously- you've been talking about the renovation since you saw the house. Gerry is sick, and this is so needed for the whole family! Gah. Just thinking about the stupidity of it gives me an angerstroke!

July 07, 2007 9:48 AM  
susanc said...

Annie:

I totally agree with everyone who said that you should be able to do with the money what you want. People give freely with no strings attached. The anonymous emailer had no right to say what they did. I bet they're eating crow right now. It's a shame that people don't think before they "speak".

Get the bathroom. It's a necessity for the quality of your's and Gerry's life to be greater and for him to be able to spend as much time downstairs with you all as he can.

They're an idiot for doing what they did. Keep your chin up. You have far more supporters than the occasional moron.

Susan

July 07, 2007 10:00 AM  
Chris said...

annie,
my gift was given as a gift. i would like to see you use the money that's been given in whatever way you need to use it - whether that is a "practical" way or a fun, crazy way. Life is too short, live it while you're here. we love you all. chris a. from rochester

July 07, 2007 11:13 AM  
susan said...

reading your blog today makes me soooooo angry. this "woman" and i use the term in place of what i really want to say, needs to learn compassion in a real freakin' hurry. it must be nice to have such a special life that you think you should know how those in crisis should live.
keep on doing whatever you need to do to keep your sanity and to the devil w/ those who give you grief.
looking forward to seeing you in lansing.
blessings to you and yours.

July 07, 2007 1:10 PM  
Lora said...

I am sad beyond words that someone misunderstood why you are adding the first floor bathroom. I am new to your blog and haven't read all of your history yet but even I knew from a few entries why you were doing this. My heart is hurting for you and your family today and I hope that you have some sunshine in your day today. I'm sending you good wishes...

July 07, 2007 2:20 PM  
lauragayle said...

Annie--{{{hugs}}} to you and your family. I've spent a week and a half with my family in Virginia (I live in KC MO) -- helping my mom take care of her sister who has Alzheimer's and spending time with another aunt who has terminal cancer -- and whose life expectancy is now measured in hours, not weeks. I'm sitting in the Detroit airport expecting to have to get a flight back to Virginia in a few days and wondering if I shouldn't have just stayed out another week.

Anyway.

A gift is just that -- a gift. You let it go into the universe and pray it does some good for the recipient. I don't care if you spend what I gave you on vacation, grab bars, lattes, slurpees, or yarn. I hope and pray Gerry is part of that 10%. But if he isn't, then you and your family need to make the most of the time together. A bathroom and laundry room on the main floor will make your lives so much easier. That good recliner for Gerry to rest in will be good for him -- body and spirit.

While you don't have the physical community of family and friends my family does (from living in the same area for many, many years), you have a virtual community. We're here for you, Annie. And just like with your blood family, not everyone agrees, not everyone sees eye to eye, and not everyone knows the whole story before speaking. Just love 'em anyway and keep on doing what you're doing.

July 07, 2007 3:09 PM  
hapagirl said...

Dear Annie,
Never feel guilty about doing the remodel -- the addition does qualify as going towards Gerry's care. Not only will it improve his quality of life, it will help with yours too. When my dad was sick, he spent most of his time on the second floor, too. Those of us who were helping with his care ran ourselves ragged going up and down the stairs. But perhaps the worst part of it was his inability just to hang out with us during the day (in the kitchen or on the patio), at a time when it was so important to be part of the family.

Gifts are meant to be sent without strings; we send them because we want to help in any way that we can. People who can't understand that giving should be an unselfish act really need a reality check.

Your family is in my thoughts and prayers.

July 07, 2007 3:09 PM  
honeybee33 said...

While I don't agree with her, I feel the need to defend the "refundee" from the attacks she's sustained here. People who are blessed enough not to know the intimacies of these types of life challenges really don't deserve to be personally and viciously torn down for that naivete. It just doubles the tragedy of hurt resulting from the misunderstanding. Few who have it explained to them would persist in that viewpoint, but the judgment is owed those that would *after* it, not before.

It would be so nice if half the people here who say they have been so inspired by your grace in handling this situation could demonstrate it themselves. Thank you for choosing to invest some of your very valuable energy in compassion for and education of others who might have excellent intentions but simply not know better. I know that educating those people is part of the "expensive" part of the deal - but it's one of the investments that pays off, too!

Hang in there! we're with you.

~ hb33 ~

July 07, 2007 4:11 PM  
Annie said...

I entirely agree with you, honeybee, and I'm sorry that I didn't step in sooner and say the same thing more forcefully.

I alluded to it before, but I don't think I was as firmly positive as you were - thanks!

July 07, 2007 4:57 PM  
rho said...

I have UC also and there are times I have a hard time making it just down the hall when I am in a flare I can't imagine having to go upstairs and that is without issues of doing the stairs.

I not only made one donation I plan on making one each month if I can (that whole retirement income thing)

somehow I think that the person who wrote the email has been very lucky in life and hasn't had to deal with any of these thoughts before. To that person I only hope your life continues to be so blessed.

July 07, 2007 6:17 PM  
Tiferet said...

Annie - I'm so sorry you had to deal with this negativity on top of everything else. I'm in awe of you. You are a hero. I read you faithfully - to be a witness for you during this difficult time of your life (sometimes all we can do, but I do believe it is a valuable energy) and also to take for myself the wisdom you offer in each blog. I have the chance to become a better person because of what you write. Do not accept this person's sad negativity. You are not velcro and it will not stick to you. Stay sassy and determined. Love, Tif'eret

July 07, 2007 6:49 PM  
Gingersnaps with Tea... said...

I don't understand people sometimes. If I give someone something, anything really, I don't attach any strings to it. It is a gift. When I purchased your red dress pattern, I paid you for a lovely pattern and it was worth every penny of what I paid. If I never knit it, it was worth what I paid. Knowing I was able to do something for you and your family was worth what I paid, the pattern is just the icing on the cake.

If I knew you, my gift may have taken the form of time… lending an ear, making some meals for your freezer, showing up on your doorstep with a case of beer when and as required (as a friend of mine did when my X left).

Being able to give of yourself, however you choose to do it, is a gift in and of itself. I wish more people understood that.

More hugs to you and yours!

July 07, 2007 8:08 PM  
Anonymous said...

I want to thank you for writing this post. I wasn't the person who sent you that email but I was feeling a little bit that way. When you are struggling to pay the normally week to week bills you can feel pretty foolish for sending money to someone who can afford to renovate her home. After reading your post, however, I can appreciate that the renovations are necessary as part of the care of your husband.

I never sent you an email, however, because my attitiude was that in a worse case scenario I had simply bought a pattern on impulse that I was unlikey to use - and who amongst the knitting community hasn't done this before? I think we all have to take responsibility for the decisions we make - including sending money to someone else.

I am leaving you this message because I think it was appropriate for you to address the issue raised and to say that I appreciated it. However, I am signing this as annonymous as I do not wish to be attacked by your fans.

July 08, 2007 8:05 AM  
Erica said...

didn't this incredibly insensitive person get a gorgeous pattern designed by you as a part of her donation?

That wasn't even one of the reasons that i donated, but I thought it was super nice of you to offer a beautiful pattern that you could otherwise make money off of by publishing it. Am I wrong?

If she downloaded your pattern, maybe she should mail it back to you or trash the file as an act of good faith also...

Best of luck with the kitchen plans. Home should be a place of healing and happiness and you all deserve that.

July 08, 2007 8:40 AM  
Karen said...

Dear Annie and Family:

Some people just don't understand an act of kindness.

Example - I have a relative who is dying from cancer. Her daughter, who is a parapalegic is taking care of her and money is scarce. The insurance wouldn't cover the pain meds and a supply of them cost almost $600. My mom had mentioned this to a friend who doesn't know this relative from a hole in the wall and yet her response was to open her wallet and help defray the costs.

It really just made me think that if everyone can just do one act of kindness a day, the world would be a better place (or at least one could hope!)

I wish there was more that I could do to help, but I hope the little that I did, helped to keep a sense of family and love.

Always in my prayers

July 08, 2007 8:56 AM  
Mrs.Q said...

Oh my word. I guess I just have a hard time remembering that not everybody was raised by my parents. Who ingrained in all of us: A gift is a gift; once it leaves my hands, it's not up to me what happens with it - no strings attached! And: family is the most important thing.

You are so brave and inspiring for sharing your story so honestly. Take care of your family and yourself however you need to!

July 08, 2007 10:09 AM  
Beth said...

Funny but last week I used the same word - mean - to describe cancer. My father-in-law has throat cancer and currently has hospice coming in.
It's mean because of the pain for all involved.
I have been thinking of it as kind of a haunted house. You're tense and nervous and preparing yourself for something scary to happen and so you can never relax and finally something scary happens that you tried to be prepared for and you're are still scared and thrown off. It sucks - I never go to haunted houses because I don;t like the scariness and unpredictability of it and now we are living in the same situaltion every day.
I am so very sorry and hope that you all will find ways to relax and recoup while you work on this problem.

July 08, 2007 10:36 AM  
Diana said...

Well, the good news is that the complainer (which is the nicest word I can think of at the moment, whiny little *&^%(*) is the term that leaps to the lips, has never been in this situation and doesn't under the exigencies. Lucky for her.

I haven't either, and it's crappy that you and your family are, but you're dealing with it as you can and must, and trying to make the right decisions for your family. Only a whiny, etc. would begrudge you the power to make those decisions.

So, good for her, and good for you, too. I'll continue to help as I can and wish I could do more. In the meantime, know that she's one of only a few.

July 08, 2007 11:08 AM  
Erin said...

It might give Gerry some hope to know that while he may never regain his height entirely, there are therapies that can help restore some of it.

I have had back problems since my early 20's and lost an inch early on in the process. Working with a Feldenkrais therapist helped to restore some of that height. Our muscles affect our height to a surprising extent and there are often things we can do to stretch out our back using our muscles. I'm not saying he'll get back the three inches but he can probably get back at least part of an inch if not more. I got back about half of the lost inch and could probably regain more if I worked on it more (I don't really worry about it unless I have a flare-up).

Hope for the future is never a bad thing.

July 08, 2007 11:53 AM  
Cynthia said...

You are the epitome of grace Annie. I cannot believe how 'generous' you have been with this negative black hole of a person (and her ilk).

I have CFS, Fibro and Lead Poisoning. We live in a house without a main floor bathroom. There are so many days where I cannot climb (or run up) the stairs because of the pain or the cost to me energetically.

I do hope you put in the best bathroom you can; one that addresses Gerry's short and long term needs. What Gerry needs is what he will find on the first floor - his family, a sense of normalcy and living.

Godspeed.

July 12, 2007 2:59 PM  

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