When the Ego Hits the Road

7 Comments

I find it very humbling that we are never too old or too anything to get a good ole’ fashion gut check from the universe.

If you believe in God (as I do), you can say that He is constantly giving you tests to help you refine your character. If you believe in karma, maybe you can say you just deserve an energetic slap once in a while. And if you believe in other things, you can make what you will of this post.

In my last post I wrote in passing that I was so unwell at one point that I had to resort to using a wheelchair when I went to visit a friend. This past Saturday I had an interesting (read: gut-wrenching, tear-jerking, existential-angst-inspiring) dilemma.

Saturday in our Sabbath, and one of the things we don’t do on the Sabbath is travel by car. Usually that doesn’t pose a problem because I either stay home or walk where I need to go- in spite of the fact that we live in a hilly place, and in this hilly place, we live on an especially hilly street. But on Saturday we were supposed to meet someone, and this meeting was pretty important. Since we also don’t use the phone on the Sabbath it wasn’t an option to call or reschedule, and I didn’t want to send *h alone (for various reasons that don’t matter at all for the purposes of this post). And, in spite of the fact that I am doing waaaaaaaaaaaaaaaaaaaaaaaay better than I was even last week, I was in no way ready to make a trek up our hill.

So I did the Julie thing: mind over matter. ‘Don’t be a baby. Of course you can do it. It’s a hill, not a mountain; you’ve done much harder things in your life than talking a walk- get over yourself! Pull it together- you’re feeling better; of course you can walk around your neighborhood!’ But as much as I tried to psych myself up, I knew in my deepest heart that there was really no way I could do it. I could barely make it to the end of my driveway. I am doing so much better, but I am still not on solid ground, and the chances of me making it up to the end of my street were precisely zero.

This left me with one option if I wanted to get to the meeting, and that was to use my wheelchair. Again.

Humph.

Here’s the thought process (which makes very little sense): If I use the wheelchair once, it’s an aberration. It was a one-off thing. It was a fluke. I had been crazy sick, and the place we went that week was super far. But if I use the wheelchair again, I am going to get dependent on it. It’s going to be like a crutch (funny irony in that comparison, huh?). I’m going to start getting lazy and then just use it all the time and stop doing things for myself. I’m going to let people do everything for me and become spoiled and over-indulged and expect people to push me around everywhere like slaves and that is just so obnoxious. Forget it. I just have to figure out a way to walk.

If I was honest with myself, here’s what I would have been saying: ‘Holy cow, not this again! this scares me on such a deep and profound level. I don’t want to be disabled again. I don’t want people to see me as disabled again and I don’t want to be judged. I don’t want to have to explain myself over and over again, and I don’t want my family to have to be ashamed of me again, and I don’t want to have to reopen all the old wounds which I thought I was over, but which apparently I am not because obviously it is such a struggle for me to use the wheelchair which I clearly need, WHICH SHOULD BE A RED FLAG TO BE THAT MY EGO IS INVOLVED HERE’.

A few weeks ago when I used the chair we left it parked outside of the house we were visiting (I used a cane inside the house). Someone walked in and asked whose wheelchair was outside. I said it was mine and they asked what was broken (looking me up and down and seeing nothing). I said “my brain”. So they said something like, “Hahahahaha no really. Did you hurt your leg or something?” And I said “No, it’s my brain”. And we proceeded to go around in circles with different variations of that same conversation several more times. Now, I suppose in hindsight it would have been more kind to have launched into a more extended explanation of what was going on, because really it just seemed like I was being evasive and stupid/bratty, but also I really don’t want to tell people a huge life story. So it’s a balance that I don’t know how to achieve- especially when I don’t feel well. But it also brought up to me that if I use the wheelchair going forward, there will need to be explanations given, and questions answered- and this is honestly not invasive from people. If a neighbor who looks outwardly fine and normal suddenly shows up in a wheelchair one kind of wonders what’s up. And that’s only fair. The question is how much of my life story is a fair response. It’s not like I’m exactly private about what’s happened- nor should I be. I have no reason to be embarrassed about getting sick; I certainly didn’t do anything wrong.

But there is always that weird thing that hangs in the air once you are out of the closet publicly, right? That people don’t know quite how to just be around you, because now they know stuff, and they don’t know whether to acknowledge it or to just “act normal” around you- as if you have undergone a transformation from who you were before they knew your big secret. And if you were raised to be decent- as most of us were- you feel guilt in the face of their discomfort. And that makes you feel ashamed of having this condition… this circumstance…this thing that is controlling whether or not you can visit a friend without a public show of weakness.

And that’s all hard stuff. Especially when it’s not in a vacuum.

Because I also have my kids who are heroes extraordinaire, and just want me to be happy and have the best life possible, but who also have feelings around having a mom who is physically unpredictable. They have a long history of their own struggles with seeing me in various states of illness or wellness and this brings up hard issues for them too.

And as much as *h has stepped up a million times over in the last month (and even pushed me up these gargantuan hills!), and hasn’t expressed even the slightest hint of anything negative about me being- um, let’s say ‘compromised’ for the last little while- he’s way too young and healthy to not have any feeling about seeing his wife in a wheelchair- again…

But truthfully on that day my struggle wasn’t with any of these things. If I am very honest my real angst on that day was that if people saw me again using a wheelchair I was going to be a disabled person again, and I was struggling with whether or not I was ready or able to embrace that identity. Unlike someone who has never walked this road before, I have spun these tires.

When I lived in Detroit, plenty of people knew me before I got sick. They saw the vibrant functioning person I was, so even after I lost most of it, they were still able to keep a picture in mind of the old me.

In Seattle, I am just Compromised Julie. I Don’t Do Things. I Can’t Do Things. My son told me the other day that I am unreliable, which isn’t quite true. I try hard to be scrupulously reliable once I commit to something- it’s just that I barely ever commit to anything because I never know how I will be feeling from one day to the next.

So I feel like going back to the chair here is taking the next step down into the vortex. Back in Detroit I had the strength to pull myself out, but here I’m afraid I might get sucked all the way in (that’s totally fear talking- anyone who knows me for real knows that I have a fighting spirit and I only question myself when I don’t feel well…).

I guess the bottom line is that I still have things to learn about humility and grace and who-knows-what. I thought I was way past whatever I could have learned from being in a wheelchair, but apparently that isn’t the Grand Plan for my life right now. I can’t say that whatever happens I will make the best of it, because I am not really a make-lemonade-out-of-lemons kind of girl.

I’m more of a toss-the-lemons-in-the-air-and-use-them-for-target-practice-as-a-method-of-stress-relief sort of person, but hey- sometimes I say, whatever gets you through the day ;)

Sometimes all you can do is just take things as they come and do your best to hope you get it right.

Really, what’s the other option?

illness 1, julie 0

18 Comments

As hard as it is to believe that just a short while ago i sat here and blogged about how terrific I was doing, now I am sitting here listening to music while I type (which I never do)- hoping to drown out the reality of what I am saying. Which is that I have been in a major health crash.

Boom.

I have had to give away my last chicken because I can’t even take care of her on a consistent basis and it’s at the point where it just isn’t fair to keep pushing that job onto my family (who was never on board with the whole chicken thing in the first place).

I have given up both dairy and coffee, which has left me feeling physically spent and in intractable pain. It has been over two weeks and rather than feeling the healing spirit wash over me I have felt beaten up and beaten down, but I’m sticking with it out of a deep sense of desperation that something just has to change for me or I will really just fall apart.

I hurt in places that are so illogical that my pain doctor and I are equally perplexed and are both left wondering why my nervous system seems to all-out hate me. I tried a new pain med the other night which seemed potentially promising but then kept me up all night throwing up so that was not a winner. But, I chalk it up to a learning experience that next time I need to try it in conjunction with an anti-nausea med on board and maybe it will be better. That, I think, is a medical low point… And it has left me so weak and depleted that today I had to use my wheelchair for the first time in literally years. Not a great memory to rehash for the family- but it is what it is, and things could always be worse…

On a happy note, we went to a wonderful family for lunch today and had an awesome time. I was mostly cognitively present- which isn’t always a given these days (yes, I have been in bad shape). I talk a lot of rubbish lately, not because I have an agenda, but because I open my mouth and nonsense spills out.

Out of the last hundred things I have cooked and baked I have gotten perhaps 40% correct and the rest have been missing ingredients although on any normal day I could make these things in my sleep.

Have I mentioned that I’m a little ragged lately?

Even this blog post is a chore. I have typed and re-typed a massive amount of the words because so much of it is jibberish. I have some sort of thoughts but they are more like free-floating bits of lint on the either that I’m struggling to grab before they dissolve like vapor…

So. I have wanted to post just to say hey, I’m alive. Here I am in all my lack of glory. I know this is super-temporary, which is why I’m not having a total freak-out- but I’m not me living in the shell of me.

For the first time since we moved to Seattle I am not going to the Mother Earth News Fair.

That’s so sad, and I can’t even get sad about it. I’m just too out of it.

This is me on neuro-shut down.

Like a brain on drugs without the drugs.

Not pretty, but real.

Looking forward to better times ahead.

and I have to quit typing and go back to bed.

Love and hugs to you all- so send me some back- I can use them!

For Grant

8 Comments

In a previous post’s comment section, Grant said this:

“Meanwhile, I am excluded from learning many things I want to learn about. I want to learn Kabbalah but am not Jewish. I want to learn about horses but am not Amish (I live near Amish country). I want to learn about farming but own no land. I want a race car but can’t afford it. “

Since he is such a good guy, and since what he said really piqued my interest, I decided to use his comments as the basis for a post. So, thanks for the inspiration, Grant, and I hope I do you proud.

Sometimes in life, for whatever reason, it seems like many doors are closed to us. But to paraphrase a famous saying, when a door is closed, a window is often opened. The trick to being happy and living a fulfilled life, i think, is in finding that window…

I know that Madonna and Michael Jackson both learned Kaballah, and neither one of them is Jewish. I am pretty sure I have seen a book along the lines of Kaballah for Dummies, and while I do not endorse that book (Kaballah, or Jewish mysticism, is quite a deep and profound subject that is best learned from a qualified teacher. It is really only partially understood even by those who have tremendous backgrounds and have spent years studying it, so I can’t even imagine how someone would attempt to distill it for popular consumption. But I digress…), it is certainly possible to get an overview and maybe even learn some of it on your own. I would guess that with the state of the internet being what it is, you could probably find resources to learn just about anything, regardless of your race, religion, hair color, or whatnot… This is one reason that, even with all of the perils of the internet, I am still happy we have it in the house. It puts so much information right at our fingertips- some days I am like a sponge just ready to soak it all up :)

I love that when you talk about horses, you think about Amish people. I also hold up the Amish as the experts on just about everything they do. Luckily, there are some good books about them by people who have studied them, and some good books by former Amish people who can speak authoritatively about all things Amish (just be careful not to read too much into the accounts of disgruntled former Amish or Mennonite folks who have an ax to grind…). If you check for books on major websites, that will give you an idea of what is available and you can then request those books from your local library. Additionally, I find that most farms are owned by folks who are delighted to speak with people who are curious. Even Some Amish people will answer questions from the “English” (meaning all of us non-Amish) if you approach them with respect. Are you by any chance near Kidron? If so, try going into Lehman’s- I’ll bet they could hook you up with some people who would be happy to teach you whatever you want :)

A farmer with no land, you say? Well now you know you are after my heart! As soon as I discovered the joys of gardening, I read about all I could get my hands on that had to do with farming and homesteading. The plan if we ever moved (who knew we would get a job offer so soon? The bureaucrats in Oak Park must have been praying really really hard to get rid of us! hahahahahahaha) was to get some land and to do things right. Secret confession: British *h would love to have an orchard… Anyhow, for several reasons, we ended up moving into a suburb and NOT having land per se. But I kept reading and building up my knowledge base, because you never know what the Grand Plan will be. When some Major Newspaper (might have been the NY Times, but I don’t remember) did a story about front yard gardens, and they commented in passing that I had chickens in Seattle but no front yard garden, because my front yard here is concrete (which is true), I felt like an awful hypocrite. But then I felt motivated. We have a narrow strip in front of our windows that had some flowery bushes. So I put an ad on Freecycle that if someone was willing to come and dig them up, they could have the bushes, which were very pretty if you like flowery bushes, for free. And within a few weeks all of the bushes were gone and I was left with a space to put in two raised beds (which you know I brought with me from Oak Park!) and 3 raised tub things (also from Oak Park)- yay!!!!

This past summer I planted two cherry trees in our backyard. This was my way of deciding that, whether we stay here or not, I am committed to taking positive actions to do what I can to live in concert with my principles. I may not be able to plow up our driveway or get a cow (yet), but I can darn well plant a few trees (and then maybe in another year a few more) and take micro-steps in the direction I think is best. I tend to think in all-or-nothing terms, and it is very easy for me to feel like if I can’t do something “right” then I shouldn’t bother thinking about it. So it’s a big paradigm shift for me to do something piecemeal. But sometimes something is better than nothing. Sometimes it takes thinking about something in a different way. We can’t have an orchard, but we can have two trees. We can’t have a farm, but we can have as many garden beds and planter boxes as I can squish into the space in front of my house.

Oh, and we can have the chickens!

I LOVE my chickens!

Grant also wanted to know how the chickens are doing. The truth is that right now I am down to one chicken. We just came back from being out of town, and high on my priority list is getting a few more, because Lacy is lonely. We had some raccoon attacks (I think I wrote about this on the blog), that left us almost chicken-less. But we are rallying and coming back strong. I had almost convinced *h that we should get a peacock to guard the flock until he read that a peacock’s screams could be heard for up to 4 miles. I thought that was great. *h, not so much. I told him that if we didn’t get a peacock then we would need a donkey (this is Julie logic at work, folks). *h didn’t buy that. I looked into feral cats, but they can be hurt by raccoons too, so that won’t work out. If you have an idea for a perfect guard animal, I am all ears, Until then, we will just need to be more vigilant and hope for the best.

And Grant wants a race car… that’s a tough one. Sometimes the closest we can come to flying is to feel the wind in our hair when our feet are firmly planted on the Earth. The question is whether we focus on our feet or on the wind. I remember when I was in physical therapy long before I learned how to walk again. One of the therapists had me use a machine for my leg muscles where you sat down near the floor and just pushed against a metal plate with your legs. But as fast as you pushed, that determined the speed you could keep going (kind of like how you pump your legs on a swing, I guess). Since I hadn’t been really using my legs effectively, and certainly not doing anything FAST with them, I remember the pure exhilaration of just going faster and faster on this machine and remembering what is was like to run full out… and I was just transported for those few minutes right there in the neuro-rehab unit. The physical therapists were laughing and laughing and they were like, “slow down!” but I was so excited to be MOVING that it was pure joy. For those few minutes I wasn’t someone with no balance and no coordination who couldn’t stand up. I was someone who was moving fast, gathering speed. I was the former gymnast tearing down the mat, getting ready for a tumbling run. It. Was. Awesome.

And I guess that’s how it is with a race car. Sometimes the closest we come is driving our 1985 Ford Fiesta down the highway with the windows down and our favorite song on the radio blasting- and that’s our race. Sometimes we bike down a path with autumn leaves swirling around and smell the breeze and go faster and faster until we are just about to lose control because we are going so fast and this is our race. And sometimes we take our tired aging bodies somewhere that nobody else sees us (like out into Amish country) and we just run flat out even if it’s just for 50 yards because we can (even if we’ll pay for it tomorrow).

Because life is too short to never race, even if you can’t afford the car.

Distance From Cows

15 Comments

Yesterday I went to my naturopath, who I am crediting in large part to helping me to be feeling better. Now, before you throw up into your mouth about how groovy I’ve become since I moved to Seattle, or how I’ve thrown common sense to the wind and am now just being carried away on a cloud of witch doctory, I will tell you the following: I am still extremely skeptical of anything I hear from anyone. I still research anything I am told, be it from a “western” doctor or from the naturopath.

Recently the pain specialist (a new one, who is more aggressive than the first one, who I am two-timing with the second one. Yeah, I am mercenary like that when my needs are not being met medically, but you kind of have to be…) prescribed me a specially compounded cream to use on my neck. This cream had such high-level pain stuff in it that I literally felt ashamed to be using it. I felt like the DEA would kick down my door at any second, or like I would appear on some list of People Who Use Super Hard-Core Meds. I used it once, twice, three times and it didn’t help. I cautiously used more and it still didn’t help. I gave myself a very firm talking to along the lines of, “Now look here! This is Very Strong Stuff! Of course it is helping! Of course it will work! For some reason, I am not noticing the benefits of it, but it is CLEARLY working, and maybe I just need to work on BELIEVING it is working!” So I worked super hard to put my remaining brain cells toward that task. I was going to believe my way to success with that cream. I was going to get pain relief! The problem was that it really didn’t help me. And then it started to eat my skin off. No joke. I felt like my neck was burning one night, and the next morning I checked in the mirror and an entire section of my neck was totally burned away. Hunh. I guess that was my body’s way of saying enough with the cream. So I stopped using it and a few days later I happened to be at the doctor who prescribed it and I showed her my neck and she was more horrified than I expected (have you ever noticed that it’s really hard to horrify a doctor?) and she told me she had never seen that before and I should stop using it right away and I told her it was fine because it didn’t help anyway…

But the point is that I tried to believe… I wanted a placebo effect. I would have been delighted to trick myself into having something work just because it was supposed to.

Now flash over to the naturopath. I went to her because I was like, “Why not? At least I can say I tried that and it didn’t work and people won’t bug me about it any more…” But she was totally on target about so many of the things she said. She had insights about how things were connected that were so spot on I was electrified by her. She asked me about things that led me to think about them in a different way. She explained things to me so that I could find out more about them. She wasn’t afraid of an educated and informed patient (like so many MDs); in fact, she embraced it!

But I went to her yesterday and she pulled out some blood work and she said my body is having an immune response to cow’s milk and it was like that moment in a move where you hear “SCREEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEECCCCCCCCCCCCCCCHHHHHHHHHHHHHHHHHHHHHHHHHHHH”
and I was like, “Oh no… that has to be wrong.”
Yeah. That was my response to a blood test. Very brilliant, huh? I may as well have fallen to the floor and flailed around and kicked my heels up and down and ripped out my hair and threw it around the room- which, quite frankly is what I felt like doing. But I just sat there slack-jawed with no good response except, “Uuuuuuuuuhhhhhhhhhhhhhhhh”.

Just to clue you in fully as to why that is so tragic, here is a snapshot of my typical daily diet:

breakfast: coffee (the international foods kind, which isn’t really coffee as much as chemicals + sugar that tastes like delicious creamy vanilla heaven) with milk

lunch: are you kidding?

supper: if I eat, it’s most likely pasta of some sort with cheese of some sort. I also love pizza, although that’s a rare treat. If we have vegetables in the house, I inhale them. Often, I am too nauseous to eat supper, though.

evening: I realize I’m starving because I haven’t eaten all day, so I grab some cheese or a hard-boiled egg, followed by some chocolate or some ice cream.

On the weekend, I have fish once and chicken once. I have lots more salad-type things. So I think that’s when I fill my tank for the week. Mostly I survive on anti-nausea meds. (This is obviously not how my family eats, and not at all an indication of what I cook for them, just in case you are sitting at home right now plotting how to come and rescue my children from this nutritional void…)

So you can see why getting rid of dairy from my diet pretty much cuts my food intake down by about 90-95%. That’s not a good thing, since I’m one of those people who eats based on what sounds good rather than being hungry. So even if I’m starving, if I’m not in the mood for what’s being served, I’ll pass. That poses a big problem for changing my eating habits. But it also poses a big problem for my health.

Because if the one doctor who has been right on target so far- who by all indications I should really trust- is telling me that dairy is causing me problems (not like lactose intolerance, where I can just say okay, so I’ll feel bloated, but real immune system stuff, that I can’t afford to have right now…), then I really need to man up and listen.

So here’s where you come in. I would like you to help me out with some dairy-free main course recipes. Ideally they will be meatless. Extra points if I can make them in a crock pot, and/or if they are not too expensive to make. I am not super-adventurous about hard-to-find ingredients, so if the recipe relies on acquiring a rare north African leaf, or an exotic Vietnamese spice, chances are I’m not going to make it.

What I do like: chocolate.

hahahahahahaha

I just wrote that to throw you off :)

I love soups, so even though those don’t make great main courses, I am always open to good recipes. I think I will need to start using more beans and legumes, so if you are handy with those that’s great. As far as everything else, what are your go-to recipes? What are the things you make again and again because everyone loves them? What are recipes that feed a lot of people or that are easy to double or triple? Right now I am very much craving the creaminess of dairy products (I think that’s because I have ulcers), so do you have any recipes that mimic that? My naturopath suggested I drink coconut cream and I was like, “Are you crazy? That’s like drinking motor oil…” But I think she had the right idea maybe. I have a potato soup recipe where you smash up some of the potatoes and it makes a fake cream of potato soup, so I am thinking there have to be other such recipes out there…

And other than that, I dunno. I will leave it up to you. Maybe this will be a post where some of the people who read this blog but don’t comment will finally come out of the shadows and help me out (hint, hint ;) ).

Wish me luck, and I will try to keep you posted. I don’t expect this to be a smooth transition, and I don’t even know honestly if I can do this; dairy is for sure my drug-of-choice. I guess we’ll all see together, huh? (I say this here to give myself extra incentive to try to be good- let’s see if it works!)

Happy 500th!

11 Comments

Guess what, friends? This is our 500th post together!

To celebrate it, I wanted to write a really seminal post about something major. I wanted to wait until i had something extraordinary to say, or something profound to express.

On Friday I was cleaning the bathroom, and as i was scrubbing out the toilet (what a great setting to really learn a deep life lesson!) I realized this: we notice so much more readily what is not done than what IS done in life.

Very rarely do people walk into a bathroom and say, “Wow! What a sparkling clean toilet bowl! What a shiny faucet! Someone must have recently bleached out that bathtub too- nice work!” But I know that when people walk into a bathroom that’s nasty it for sure stands out that things have NOT been done.

And it hit me that this is a good allegory for life. What we really notice at the end of the day is what we have NOT done. Very rarely do we regret what we HAVE done (“Gee, I never should have taken that vacation; it’s so much less relaxing than I expected.” or “Hunh. What a waste of time hiking up that mountain; the view just isn’t as pretty as I thought it would be…”). But we often regret missed opportunities. We look back over our lives and the chances we didn’t take are as glaring as a filthy toilet. We say no so often when we should just say yes.

I got a copy of a report that one of my doctors sent to another one of my doctors. In in, she describes me as “grouchy and frustrated”. She notes that I engage in no meaningful activities. When I first read that I got a bit of a jolt. But then I very quickly realized that she was absolutely right. When she met me, I was grouchy and frustrated. I was in a very bad head space, and although I told her that I was feeling lousy, and that this was not typical for me, she really had nothing else to judge me on. So she wrote her honest impressions of the person in front of her. And when I described to her what I was doing on an average day- sleeping, taking pain medication, laying on a heating pad, and staying in bed, I can see absolutely why she thought my life was pretty purposeless. So she wrote that too.

But what was different about my reading of that report from all other times I would have read something like that is this (and it’s a biggie for me): I was totally at peace about it.

For the first time in my life I felt like I didn’t have anything to prove. I didn’t feel like I had to launch a crusade to prove her wrong, or that my life was indeed worthless, or that this was proof that I was actually worthless. I saw it for what it was: a snapshot of a bad day frozen in time. And oh well.

And that was so freeing I can’t even put it into words.

I wish I could share with you some big secret about how I got to this place. I think it’s a combination of age and medication and being broken.

But I feel like I have been broken the way a seed is broken before it sprouts. If you look at a seed under the ground, it looks like it is dying and decaying. It cracks open and bears no resemblance to the neat little package you first put into the soil. As it continues to decompose something wondrous happens. It sprouts a tentative little shoot. And that shoot, if nurtured in the right conditions becomes a strong and hardy plant. That seed is destroyed in order to become something so much more.

And I feel like a seed.

I have been utterly destroyed by my illness. The person I was has been decimated. For so many years I have struggled to piece together a patchwork quilt of who I used to be with who I wanted to be with who I thought I might be and I just failed and failed and failed. I was helpless against a brain that stayed broken.

But now I feel new. I finally feel hope on the horizon that who I can be going forward doesn’t have to be the old me minus something. It can be a new me reinvented. And that feels liberating. It feels like saying yes to life instead of no. It feels like looking at what I can do instead of what I can’t. It’s about the life I have and not the life I don’t.

This is the 500th post on this blog and it is a milestone for me, not because I have anything Earth-shattering to say, but because I am in a good place on this day and in my own skin. I don’t know what tomorrow will bring, but at least in this moment, I am okay.

And that is worth celebrating.

Truth be told, there is nobody I would rather celebrate it with than you guys :)

Happy 500th!

i love technology i hate technology. wanna do a good deed?

9 Comments

i have been incommunincado for the last several days- hiding out at an undisclosed location somewhere under the mason-dixon line. i have thought briefly a few times about what my upcoming post might be about, since my next one will be my 500th… but then i checked my friend’s blog- the one who was burned- and something WAY more important has come up.

i try as a general rule here not to ask you guys for stuff unless it is really important. i get quickly tired of blogs and groups and even people who are forever asking ” what can you do for me???”

i know that a long while back i posted that a certain farmers market was trying to raise funds to get off the ground. and i definitely asked those of you who pray to say a few words on behalf of my friend dave, who was dying of cancer. but tonight i saw that another friend has set up a fund to pay for my friend and her family to help them through this holiday season (passover, which is incredibly labor intensive, and probably the most expensive time of the year for us), and to assist them with the enormous costs of running her home and the medical treatments that won’t be covered under their insurance. with 10 kids to take care of (the youngest has down’s syndrome) and a husband who is currently cutting down his hours so he can manage the home as well as the children and his wife’s medical needs, you can imagine that the debts are just piling up on top of them.

this is a family that lived EXTREMELY frugally to begin with- no frills and no extras- so it’s not like there’s a lot of fat they can cut out of their budget to tighten their belts. my friend would faint away with humiliation if i told you they lived at the poverty level, but if i told you what they made it in year to support a family of 12 you would never believe it.

so why am i telling you this? because a real person who i know in real life, who is honest and trustworthy has set up a fund to help my friend. i can vouch for her being a stand-up person. and my friend has 100,000 % integrity no question about it. any funds that are raised for her medical needs and to keep her family afloat during this crisis will absolutely go for that purpose- you can have absolute confidence.

on her blog, there is a link to the donation site. i tried multiple times to just post the donation site here, but i’m hopeless with technology and *h is asleep. so, i am putting up the link to her blog. please follow it to the donation page and look at the picture of her in the hospital bed.

and remember to be grateful for what you have.

and no joke, people- even if you can only spare $5- please send it. i know how many people read this blog, and that adds up to a lot of money. and if you have a blog, or a facebook or a facechat or an instagram or a hulugram or an i-phone or whatever young people have nowadays that makes other people look at stuff, please send this on. i know tons of things get drowned out in the overflow of dancing kitty cat videos, but this is real stuff with real people who i actually know- so i can honestly tell you it isn’t a scam… time to shine, people- whatcha gonna do? here’s the link to her blog:

http://avivahwerner.com/

http://www.youcaring.com/medical-fundraiser/help-a-mom-who-had-hot-wax-explode-in-her-face-/162412?utm_source=widget

inside out

1 Comment

a close friend of mine who lives in Israel was badly burned over her face and neck a few weeks ago. she has been posting on her own blog lately about the struggle she is having to come to terms with people looking at her face, and people seeing her in a way that she feels doesn’t reflect who she is.

although she is also posting about many other aspects of what she is dealing with, because she is being very brave to speak publicly about this particular issue I feel like it won’t infringe on her privacy to discuss it here.

my friend is a very beautiful person, both inside and out. she is one of those rare individuals who is constantly working on herself, and who consistently has a message worth hearing. but you might miss that if you only wanted to gape at the burns on her face.

she has more courage than any dozen people I know, and she has the fortitude of an army, but I could see how people might miss that if their main concern was how much scar tissue she was going to have after her accident.

she is one of the best moms I have ever met, and seriously one of the best human beings, but if your biggest way of sizing someone up when you meet them is by how creamy their complexion is, she just might not measure up to your high standards right now.

listen, it’s a very real thing that we all have to make judgments about the people we come into contact with. I would be pretty disingenuous if I told you I didn’t judge people a gazillion times a day, or even that I thought people shouldn’t judge other people. I think we were given common sense for a reason- in order to be discriminating so that we don’t make stupid decisions that we could have avoided.

but I have also been on the other side of this double-edged sword. when I was in a wheelchair I became an instant nonentity. I was spoken down to, condescended to, talked over, or ignored completely. people avoided touching me when they gave me change, watched as doors closed in my face or as i struggled with one thing or another and they stared without helping. i was gawked at openly and ridiculed by folks who should have known better.

did i grow from the experience? not really.

ha! i bet that was a surprise, huh?

i know i am supposed to say how it made me such a better person, and how i don’t regret it, because it made me who i am today. well, the truth is, i was compassionate before i was in the wheelchair. i was already kind, so i can’t say it was transformative. mostly it was just hurtful.

it was painful for me and awful for my kids.

one day, after being very excited that *h was home and i could finally get out of the house with the family, we were all going to go for a walk (technically, i was going to go for a roll…). one of my very little kids asked me, “mommy, is it ok if you don’t come? i don’t like when you go out with us in your wheelchair because people stare at us…”

wow. from the mouths of babes…

so i feel for my friend. i have a very small idea of what she will be going through over the next few months once she is out of the hospital. she has to stay out of the sun, which pretty much leaves her indoors during peak hours anyway, but venturing out when you are on shaky ground with a “new you” is hard stuff. i hope people will be kind to her, but i also know that people are naturally curious.

I’ve written lately about struggling with the fact that TBIs are so invisible, and that we can be so bad off and yet nobody knows. but hearing about what my friend is going through makes me so grateful that i have the option of being invisible. because some days when someone asks “how are you?” and they don’t really care, i like to answer “fine”- because i don’t really care about them either, and who needs a while dissertation on my health situation? but my friend doesn’t get days off…

i know how beautiful she is, and she will always be that way to me, regardless of how her face looks when it heals. i think all of the people who love her feel that way. i wish i could walk in front of her with a sword and a shield and fight off all the bullies who would be unkind to her while she is recuperating from everything she has been through. life is tough enough without having to worry about being judged about something as silly as your face.

don’t you think?

Older Entries Newer Entries

Follow

Get every new post delivered to your Inbox.

Join 25,219 other followers

%d bloggers like this: