During the years that I was a single mom, I worked at many jobs. Most were fairly unpleasant because I lacked the confidence and credentials to apply for better ones.
The job of shortest duration was at a nursery in Western North Carolina. I was required to work with bare hands in a white, powdered pesticide which was stored in a huge vat. The owner did not issue gloves or masks to me and the other woman who was also a new employee. We placed handfuls of the powder in potted plants and mixed it into the soil with our hands.
I love plants so I had thought that working in a greenhouse would be pleasant.
Several hours into the day, as I began to feel nauseous and dizzy, my co-worker complained of the same symptoms and then collapsed. Neither of us could speak coherently.
I went to tell the supervisor that the other woman was lying on the floor and that I wasn't feeling well, either. He thought we were slackers, and told me that we should stop complaining and get back to work.
I hauled the other woman to her feet and told her that we were leaving. She was in no condition to argue, so I loaded her into my car and drove us both to the local hospital.
We were both confused and unintelligible by this time. The hospital staff immediately placed us in isolation, took away all our clothes, even my brand-new sneakers, and gave us decontamination showers.
After several hours of monitoring, we were discharged. I must have driven myself home, but don't remember it. I never saw the other woman again.
Later, I learned that the nursery was using a pesticide which had been banned in the U.S. They were able to purchase it very cheaply for that reason. I am still outraged to think that they had so little regard for the lives of their employees.
They later reimbursed us for the cost of our clothing, including my brand-new sneakers, which had to be destroyed. Ironically, I come from a family of lawyers, yet I never sued them. I didn't have the means to hire one, and besides, I wasn't thinking clearly for a long time.
For many years, I suffered from the effects of this incident. It was as if some of the circuits of my brain had been burned out, and I would begin a sentence and then lose the thread of my thought. I was brain-damaged, although most people probably didn't realize it because I was able to compensate: If the word I wanted eluded me, I could substitute another, and nobody was the wiser.
I don't know when it happened, but at some point, it seems as if the holes that had been chemically burned in my brain fused themselves together again. I no longer have the feeling that my synapses are damaged because my thoughts now flow as they were intended. (As far as I know.)
This morning, I woke up thinking about this incident and wondering how it might relate to Alzheimer's Dementia. My husband, Flip, was diagnosed with AD several years ago at such a young age that for a long time, doctors were unsure of their diagnosis. Sadly, both MRI and PET-scan confirm it, so it seems as if in this area, as in so many others, he is precocious.
So far, his abilities are impaired only with regard to short-term memory and losing things. Flip is a musician and artist, and his creativity seems unaffected. He is a lucid participant in conversations which, however, he may not remember afterward. He has begun to struggle for words on occasion, yet his quick wit is still intact. He remains in every way the delightful, charming, kind and positive man he has always been. He is the most generous person I have ever known. In fact, Flip is pretty nearly the perfect man.
There is no way to tell what the future will bring.
In his words, "It's a small price to pay for being here."
I'd be lying if I said that it doesn't affect our relationship. I have more control than my fair share now, and handle our financial affairs, make appointments, and sometimes speak for him when he is unable to express his thoughts to others.
I get very angry with myself for not always being as patient as I should be, and as he deserves. I am so aware that it will get worse that it is ruining what we could have now. And I know that someday, when it IS worse, I will kick myself for not fully enjoying his company while he still knows who I am.
Alzheimer's is the best argument I know for living in the here-and-now.
Still, remembering my own brain damage and how it apparently healed itself makes me wonder if somehow, Alzheimer's-afflicted brains could do the same. I am not a scientist, nor am I a believer in religious miracles, although I think that I would take him to Lourdes if I could, just in case there's anything to it.
I wonder if neurologists could determine anything from my experience that would be useful in treating this ghastly disease that robs people of themselves, a bit at a time. There must be a link that has not been discovered, something in our brains that could be accessed to put Humpty Dumpty together again.
As every child knows, even earthworms, cut in half, will wriggle away in two pieces, smaller but still complete. Surely we would not exist if we did not also have the ability to repair ourselves.
Somewhere in this large mass of grey matter that we carry is the key. We badly need to find it. Now that the Baby Boomer generation has come into middle age, Alzheimer's is occurring in younger people all the time.
The pressing need for Viagra has been resolved, and hopefully, scientists will now have some free time, energy and research dollars to dedicate to curing this cruel disease. After all, even Viagra won't be of much use to someone who can't remember what it's for.
Monday, March 05, 2007
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56 comments:
What a great post. I'm sorry you guys are going through this. I don't have any words to offer you, I wish I did. {{hugs}}
Very well said. I love how, even when you're writing about something that is generally a sad topic, you manage to add your wit to the last line.
I was hoping to have something more eloquent and inspiring to say by the time I got to this part, but I don't.
Cece,
Thank you. You give good hug.
Thinker,
You even read eloquently. Thank you for caring.
If I was a smart man, I would read this particular post every day, I would savor each word written here.
Often times I have watched, trusted those in the know. Thank goodness you had the good sense to get yourself (and that fortunate woman) out of that nursery when you did. Who knows what five more minutes would have brought?
And yes, the gentle yet obvious reminder to live in the here and now -- who knows what tomorrow, who knows what next week will bring?
Thank you for this -- for your wit, your charm, your brain, your heart.
We are hoping that you and Flip can come for a visit in the fall. We are moving into a house with a living room big enough for house concerts and iti would be really cool for Stephen and Flip to do a show together.
Thomas,
Your extravagent praise makes me blush. Thank you for your kindness and understanding.
I have noticed that wherever you comment, you always say something positive and encouraging, and I'm sure that others appreciate it as much as I do.
Sister 7,
We would love to visit you guys. It's been much too long.
And it would be wonderful to reunite the old music partners. They always had a great performing chemistry.
What a thoughtful, thought-provoking post.
I'm so sorry for your trouble and am glad it eventually righted itself.
Brains have amazing regenerative powers, and it may very well be that someday we'll know how to repair, or reverse, or best of all, prevent the damage done by Alzheimer's. Right now, not enough is known about the disease, but they're working on it every day.
Big hugs.
The brain is a wonderful organ which is still not fully understood and is known to have amazing re-generative properties. However, science does not have all the answers yet. I am sorry that you are both going through this. I do hope the big breakthrough in research will be soon. At the moment, as you may know, gingko bilboa extracts have shown to be a promising treatment of AD.
Jay,
Thank you so much for your encouragement and nice hugs.
I considered my problem especially unfair because I never did drugs, yet I had similar damage.
And Flip's is unfair because it began in his 40's while we tend to think of AD as an elderly disease.
But then, life is unfair to all of us in one way or another. It's always better to count blessings than grievances.
Squirrel,
He takes gingko biloba and other herbs, as well as a medication that is supposed to slow the effects in the long term. We eat a lot of sushi, as fish has always been considered brain food.
I totally believe in alternative medicine, so I'm always looking for new remedies. His relative youthfulness is surely an advantage because he has more time for science to come up with a cure.
Wow,
I will be thinking good thoughts for Flip. I can't believe someone had you working with this pesticides. It is amazing how your brain healed itself though!
Michael,
Thank you for your good thoughts. That helps so much.
I hope it healed because that would offer promise to others with brain damage. I do believe that we all have capabilities that we have not yet tapped.
"If I was a smart man, I would read this particular post every day, I would savor each word written here."
well said goodthomas. Susan, I am so very sorry. This post broke my heart. You and Flip will be in my prayers.
I used to know a woman who worked in a battery plant to support her two kids. I can't believe she's still alive.
I'm not a bit surprised about your former employer and his willingness to risk the health of workers to save a few bucks.
As much as I detest retaliation, in this case I wish you'd sued the hell out of him.
As for AD, I have some theories about it. Of course, I am not educated in this area but my intuition occasionally kicks in and I have "gut credentials". :)
Human beings were not designed to take both the constant stress and the constant bombardment of toxic chemicals in the environment. If toxins in the air can cause global warming, well, imagine what they can do to human beings.
AD is one way of shutting out the world, shutting out the constant bombardment of input.
Do you think Flip might benefit from creating a very quiet, private and safe place for himself where he can spend time for balancing purposes?
Just a thought. Worth what you paid for it..
Peace,
~Chani
Urchin,
Thank you.
Mist,
I hope she is, and that her life got better.
Chani,
Our apartment is a quiet, safe and private place. He's a blues musician, and spends most of his time playing and recording his own music there.
We ride our bikes and walk on the beach a lot in all seasons. It's very nourishing and peaceful.
We try to stimulate his mind while keeping his spirit calm.
And he meditates. He is one of the most naturally well-balanced people I know.
You make an excellent case for toxins causing AD as well as numerous other illnesses, and I deeply appreciate your input.
Ugh, that story of the nursery owner is so infuriating. It's such a shame how irresponsible people can be.
I love this quote, "It's a small price to pay for being here."
That's so on the mark. I like your husband already.
goodthomas said it in a way I could never have. My heart goes out to you and Flip. But if anyone could get the most out of the here-and-now you two can.
thanks for sharing something that couldn't have been easy for you to talk about.
Furious,
He has a wonderful attitude. I often wish I were more like him.
Bob,
You're very perceptive. I haven't mentioned this before in a post, and it feels kind of like an outing.
I discussed what I wanted to write with Flip, and then read it to him before I published it to make sure he was ok with it.
Goodthomas constantly amazes me with his depth and grace.
Great read.
You really should have sued... That could have been potentially fatal.
Heart, My heart goes out to you because, as you know, my Mom is suffering from the same...but she's always smiling..which is what counts...and yes all we have is right this moment...It can get frustrating but in the long run it's worth it. So take a deep breath and appriciate what's right in front of your nose....
and keep your sense of humor! My silliness has gotten me thru some brick walls on my way to crazy...
Peace
Jingo,
I know. I hope the other woman made it. We had never met before that day, and I can't even remember her name, but we were quite sick.
It would have been a great lawsuit, and I would have liked to put that scoundrel out of business.
Odat,
I was hoping to hear from you because I know you're dealing with it, too. Your mom sounds like a sweetheart, and that's encouraging. Maybe AD is a kind of "in vino veritas" and what remains is who a person really is, in which case, we've got it made because Flip is a sweetheart, too.
We are relying heavily on humor, and even make sick jokes about the effects of his ailment sometimes. At least it keeps us honest while letting off steam.
Apparently I missed a good post while in Florida. But I read it just now. I admire your strength and courage, heart. Flip is a very blessed man.
No words of wisdom because I don't have any, just virtual hugs and hopeful thoughts for the both of you.
You know you truly love someone when no matter what state they are in, you just know you want to be with them no matter what.
What a lovely account of true love.
This is as good an argument as any for stem cell research. I went to a conference once on AD and we were presented with a case of an 18 year old boy who had died of the diesease, so it can strike hard at the young. It's a cruel disease for the patient and possibly much more difficult for the spouse. This is such a compassionate post and it sounds like you and your husband are blessed to have each other in spite of the hadn you've been dealt.
Goodness, this is a hard topic, thanks for sharing. I have no advice, doubt you want any. But my thoughts are with you and flip and hoping for a cure or something to help slow the progression.
You continually amaze me with your ability to use language to bring stories to life, in a way I only wish I could.
Thanks so much for sharing this... my heart goes out to you and Flip, and I hope for many more years for you of happy, if occasionally bittersweet, cognizant moments together.
I will note that the lawyer in me is hopping mad at your former employer. There should be no statute of limitations when you're dealing with cretins like that.
Christina,
Welcome back! I hope you had a great trip.
And I am probably the luckier one here. I try to be a good person, but Flip is naturally so good without effort.
Kate,
Thank you for that. I don't think there are any wise words, really. Hugs help.
Lizard Princess,
What kind words you bring, and how nice it is to receive them.
I'm trying to think of Alzheimer's as an adventure, rather than a curse. And I get to share it.
Thank you for coming here today.
Csl,
Every disease is a good argument for stem cell research. You're so right.
I have never heard of an 18-year old with Alzheimer's. I wonder if that boy had Progeria, the premature aging disease, and developed AD because of it.
Olives,
Your good thoughts can only help. Thank you.
Law Fairy,
You flatter me, but I can take it.
Considering the fact that my family is lousy with lawyers, I can't believe that I didn't sue the guy.
I am probably fairly unique in that few people raised as I was have had jobs usually filled by migrant farm workers. It's infuriating that the nurseryman considered his employees' lives valueless. Most were Mexican, and the white folks of NC don't generally care for non-whites. So much needs to change as this is far more than negligence. This is hateful.
If I had died, there could have been a wrongful death action maybe tinged with depraved indifference. Guess I blew it, huh?
God, you have such a beautiful way with words. Thank you for sharing. I sincerely wish I knew you and Flip in person. You guys are amazing.
Holy shit...on so many levels.
On that COMPANY WITH THE CHEMICALS!!??? Oh god...I'm just sitting here slack-jawed, shaking my head.
And Flip? Wow...I'm humbled. Extremely humbled by your fierce spirits!
And our societies need for viagra and hair growth BULLSHIT??? Jesus, people. wake the F up and see what's REALLY IMPORTANT.
Thank you for sharing this. I needed to read this today. I'm sending you and Flip my good thoughts. I'm sending you my best.
Lee,
I wish it, too, every time we communicate. You should move to California. There are so many artists here, and the boys could be surf rats. It'll be great, you'll see.
Kevin,
Thank you for sending such good thoughts. Your best is as good as it gets. I am blessed.
How absurd is it that there will be so many sexy men out there with great hair who don't remember their own names? We are a very sick society in immensely creative ways.
You are such an effective writer. Honestly, whenever I read your writing, I want to stand up and cheer.
Your post made my heart turn over several times, first for your experience and then for Flip's. Alzheimer's is the cruelest thing I've ever seen, just about.
But, indeed, you and Flip are blessed to have each other, right here, right now.
Jocelyn,
You're so sweet. Right here and right now is what we all have. It's just a little more dramatic when one has a disease.
amazing what the human spirit endures for the love of family. allow yourself freedom for a litle guilt, bask in the good days and know the not so good days, well those suck, but that's when you go back to basking on the good days : )
Ive watched my grandmother have AD for 8 years. I know quite a lot about this, As long as you guys have each other and a good support network behind you well then its all you can hope for while science tries to come up with something more permanant of a cure. I have nothing but hope and prayers for you both and in the darkness of all of this there are still flecks of light to catch. What an inspiring love you have for one another.
Your mention of the promotion of Viagra and the like really hit home for me. It's frustrationg that medical priorities in research are so skewed. I do understand the money making potential in some medications but the lack of a cure or fix for so many other conditions says so much about our country's priorities.
Hugs to you and Skip!
Wow, what wonderfully written piece.
What you went through then with the despicable nursery owner and what you're going through now with Flip's journey through AD... I can find no words other than to say that my thoughts are with you both. You're a strong woman and you're both lucky to have each other.
-velvet
Eslocura,
It sounds as if you've been there. I guess the reason it's an adventure is because we don't know where we're going.
Judith,
I appreciate your kind thoughts and prayers so much. My hope is that the disease will move very slowly because Flip is so young compared to most people who get it.
Jali,
How is our society messed up?
Let me count the ways.
Vanity over health certainly qualifies, but as you suggested, there is probably a lot more money in cosmetic improvement than in curing disease.
Velvet,
Thanks for the comforting words. I believe in karma, but it just crossed my mind that if there were any justice in the world, the nursery owner would have Alzheimer's and Flip would be filthy rich. :)
I had no idea. I am so sorry. I thank you for the reminder to appreciate what i have right now. I will be thinking about this post for a long time.
Meno,
I just went back to your blog and re-read all the bad jokes from yesterday. Laughter and the kindness of friends is always so helpful.
First, this story proves why we have to regulate business. Although the right would like to believe the invisible hand of capitalism will always look out for the little fellow, your story shows otherwise.
Regarding Alzheimers...it's something I have tremendous hopes for a cure in our lifetimes..hell, within the next several years. Give him my best.
Stewart,
I do hope you're right that a cure is near.
There will always be people of small conscience in charge. It's the American way.
My 83 year old father has some dementia, brought on by Parkingson's Disease. It is so hard, watching him struggle for words and falter in conversations. I can't imagine how difficult it is for you and your husband.
I agree that more time, energy and resources need to be spent on dementia related issues. Thank you for the great post.
Very true. You sound so strong. I'm more of the helpless cry while rolling uncontrollably on the floor type. What a blessing that Flip's creativity and music skills haven't been affected. You're only human and allowed to lose a temper or 2 here and there.
I felt like going to that nursery and taking a bat with me....but I'm not the violent type either. Good thing you listened to yourself. A lot of bad things are avoided by listening to one's self-I truly believe that our intuition is a survival instinct.
Laurie,
I'm sorry about your father. It's painful to watch loved ones suffer at any age.
Thank you for coming by.
Angel,
I believe that intuition is a force of Nature set up for our own protection. It has no vested interest, no other agenda, and should therefore be listened to.
I don't always do it, though.
Stewart,
My comment to you sounded more cynical than I feel most of the time. I still believe that America is a great country. We just have to reclaim it so we can once again respect ourselves and be respected in the world.
Wow. Now THAT was amazing. And powerful. My heart is with you.
Roonie,
Thank you so much. I appreciate it.
I got through this whole post just fine, and then suddenly and sharply remembered the loss of both of my grandfathers to the horrors of Alzheimer's. I don't know what to say, but it hurts. And I'm sorry you have t watch your perfect man experience it. No words....
Cristin,
Well, thanks for being here. And I'm sorry about your grandfathers.
I visited your blog and you'll be seeing a lot of me.
I'm sorry that you and Flip are faced with this. I'm also optimistic. I really hope that significant progress is made quickly.
My grandfather had dementia but not Alzheimer's. It's not easy to always be a patient caregiver. Don't be hard on yourself.
I pray that you and Flip have many more years of loving, nothing lost.
Katrice,
Thank you. Thank you so much.
You inspired me to go over and give my husband a kiss and a hug. I'm giving you a virtual hug too.
Liz,
Awww, that's so sweet. Glad I could help.
I hope you are reminding him to take his Viagra. :) But, seriously, I do wish you guys all the best. You tell a lovely and touching story.
Parlancheq,
Thank you so much for your good wishes.
If he ever needs Viagra, I'll be right there with his medicine like an X-rated Nurse Ratched.
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