Update:
This was written almost 7 years ago. Since then Rosie has let go of the experimental program, and is on "regular" drugs. She has improved on the drugs, and grown in many ways. Rosie has also been reborn as a professional artist. Thanks goes to the iPad and a government program that encourages handicapped people to adapt to the workplace, or vice versa. Rosie continues to amaze and inspire me with her attitude of love and gratitude. My life would be poorer without her in it.
You know what I mean by bad hair days. A bad hair day is not a time of major tragedy, more a day of general dissatisfaction with Life, the Universe and Everything.
On a bad hair day you feel as if you are not living up to your own potential, whatever that might have been. You don’t feel as if the Universe is holding up its side of the bargain either.
For starters it is cold, damp and the sky is gray. I find it almost impossible to be unhappy under blue skies and warm breezes. Ask me how I am, and you get a weather report.
On a bad hair day business is poor, last year’s fat pants feel tight, you can’t find a thing to wear and even if you did there is no reason to get all gussied up anyway. The hair is not cooperating either. The importance of good hair to one's mental health should not be under-estimated.
In short, a bad hair day is characterized by feelings of self pity and self loathing in more or less equal parts. You feel ugly, unlovable and useless.
There is a simple cure for a Bad Hair Day. Get out of your own head and go hang out with someone who is worse off than you are. Make yourself useful.
This is where the Homage to Rosie comes in.
My friend Rosie has early onset Parkinson’s disease. It started when she was 34 and living the good life in sunny California. Rosie is an artist. She was well on the way to becoming a successful professional photographer.
Rosie is now 41, looks a gorgeous 25 (PD keeps you looking young for all the wrong reasons) and would gladly trade all her good hair for the ability to connect her excellent brain to her sore, stiff, trembling, unresponsive body.
PD medications have side effects and tend to become less effective over time. The trade-off may well be worth it if you are diagnosed at 70. Rosie has chosen to leave the drugs alone for now. Instead she is working with an experimental mind/body protocol based on Traditional Chinese Medicine. For anyone who is interested, visit http://pdrecovery.org/
In a small incomplete nut shell:
According to the PD Recovery team idiopathic Parkinson’s is due to a complex disruption in the body’s meridian system that results in a person “living on adrenalin” for many years. The disease finally manifests when the adrenal system is totally exhausted. According to this model the ability to create dopamine is not dead, merely latent. With the right combination of energy work and meditation it should be possible to re-activate the dopamine system.
Easier said than done. Just like getting enlightened is simple: “Just do not think about a pink monkey”. Supposedly SOME people have managed to do it. Their case histories are in the e-book, free for the download at the website http://pdrecovery.org/
Parkinson’s Disease is the darndest most confusing condition. Most of the time Rosie is in a wheelchair. She needs assistance with the ordinary tasks of daily living. Trying harder makes things worse. Striving and trying puts you into the realm of Adrenalin. You’re supposed to aim for a blissed-out attitude. Dopamine is the neurotransmitter of joy.
This is Rosie's fingers on the key board. Notice the way her left thumb curls under. That's not her idea, it just does that. It hurts too.
For Rosie, trying to bring a fork to her mouth is a major effort that can result in tremors all over her body. Are we having fun yet? “Just feel blissful”. YEAH, RIGHT.
Even speaking is a major effort, and this for a person who is by nature sociable, who loves to get together with friends and have a good time.
Speech is not always necessary. Two years ago Rosie shared a hospital room with one of Nakusp's favourite old timers, Molly H, now 95.
They became fond of each other, Molly is always asking about Rosie. Molly had a mild stroke a few weeks ago. We went to see her in the hospital. It is too bad I can't show how Molly's face lit up when Rosie came into the room. They didn't need to talk that much, just held hands and let the love flow.
On bad days Rosie is almost locked-in. I would honest to goodness rather be a quadraplegic and at least be a functioning talking head.
But, and this is where the confusion comes in: not all days are bad days!
Remember there is nothing wrong with Rosie’s muscles. She can walk, sort of. It is a bit like when you were just learning to skate: you can go in a straight line but you can’t steer too well and you may need to bump into something to stop.
Strangely enough PD people do stairs really well. Don’t ask me why.
Watch the look on people’s faces when they see Rosie struggle up out of her wheelchair and climb the stairs to the library in the old village schoolhouse. It confuses the H out of folks, and makes some people wonder why she needs that wheelchair. Trust me, she would not be in it if she didn’t.
Rosie is living independently in her own home thanks to Home Support and a team of volunteers. Some people come once a week, some once a month and anything in between. Rosie’s Mom does 2 days a week.
I don’t want to make Rosie out to be a saint. She isn’t. What she ideally would like and what the loose-knit team can give her is not always the same. Both Rosie and the team are learning to deal graciously with issues of boundaries, commitments and occasionally tough love.
But 90% of the time Rosie is bearing her challenging life with remarkable grace and courage. I doubt I could do half as well.
Rosie and I are both Cancers, and one thing we have in common is the famous Cancer loony laugh. The last time I was there I shared some favorite jokes and we both just cracked up and had a great time laughing. After that Rosie found her tongue and entertained me with stories of the time she was in an earthquake in California. The world needs more gelo-therapy! That’s healing through laughter.
I do a shift every other week. The opposite week I do gift Reflexology treatments for a friend who is on home kidney dialysis and his heroic caregiver wife. If I were a saint I would volunteer more than one afternoon a week, but I lack the Mother Theresa gene.
What I do right now works well to prevent burn-out at either place, and I sincerely look forward to seeing both parties.
That great author Anonymous wrote this sappy poem. It describes a person in the throes of self pity going about her day and meeting people with various disabilities. A blind girl, a deaf boy, a man without legs. Each stanza ends with the words:
“Oh Lord, forgive me when I whine.
I have two eyes (or ears, or legs)
The world is mine!”
Seeing Rosie always brings that home in force. No matter how I feel when I arrive there, I always leave filled with deep gratitude for my marvelous functioning body.
Rosie, I honor and salute you.
And that ends this recipe for The Cure for a Bad Hair Day.
This was written almost 7 years ago. Since then Rosie has let go of the experimental program, and is on "regular" drugs. She has improved on the drugs, and grown in many ways. Rosie has also been reborn as a professional artist. Thanks goes to the iPad and a government program that encourages handicapped people to adapt to the workplace, or vice versa. Rosie continues to amaze and inspire me with her attitude of love and gratitude. My life would be poorer without her in it.
You know what I mean by bad hair days. A bad hair day is not a time of major tragedy, more a day of general dissatisfaction with Life, the Universe and Everything.
On a bad hair day you feel as if you are not living up to your own potential, whatever that might have been. You don’t feel as if the Universe is holding up its side of the bargain either.
For starters it is cold, damp and the sky is gray. I find it almost impossible to be unhappy under blue skies and warm breezes. Ask me how I am, and you get a weather report.
On a bad hair day business is poor, last year’s fat pants feel tight, you can’t find a thing to wear and even if you did there is no reason to get all gussied up anyway. The hair is not cooperating either. The importance of good hair to one's mental health should not be under-estimated.
In short, a bad hair day is characterized by feelings of self pity and self loathing in more or less equal parts. You feel ugly, unlovable and useless.
There is a simple cure for a Bad Hair Day. Get out of your own head and go hang out with someone who is worse off than you are. Make yourself useful.
This is where the Homage to Rosie comes in.
My friend Rosie has early onset Parkinson’s disease. It started when she was 34 and living the good life in sunny California. Rosie is an artist. She was well on the way to becoming a successful professional photographer.
Rosie is now 41, looks a gorgeous 25 (PD keeps you looking young for all the wrong reasons) and would gladly trade all her good hair for the ability to connect her excellent brain to her sore, stiff, trembling, unresponsive body.
PD medications have side effects and tend to become less effective over time. The trade-off may well be worth it if you are diagnosed at 70. Rosie has chosen to leave the drugs alone for now. Instead she is working with an experimental mind/body protocol based on Traditional Chinese Medicine. For anyone who is interested, visit http://pdrecovery.org/In a small incomplete nut shell:
According to the PD Recovery team idiopathic Parkinson’s is due to a complex disruption in the body’s meridian system that results in a person “living on adrenalin” for many years. The disease finally manifests when the adrenal system is totally exhausted. According to this model the ability to create dopamine is not dead, merely latent. With the right combination of energy work and meditation it should be possible to re-activate the dopamine system.
Easier said than done. Just like getting enlightened is simple: “Just do not think about a pink monkey”. Supposedly SOME people have managed to do it. Their case histories are in the e-book, free for the download at the website http://pdrecovery.org/
Parkinson’s Disease is the darndest most confusing condition. Most of the time Rosie is in a wheelchair. She needs assistance with the ordinary tasks of daily living. Trying harder makes things worse. Striving and trying puts you into the realm of Adrenalin. You’re supposed to aim for a blissed-out attitude. Dopamine is the neurotransmitter of joy.
For Rosie, trying to bring a fork to her mouth is a major effort that can result in tremors all over her body. Are we having fun yet? “Just feel blissful”. YEAH, RIGHT.
Even speaking is a major effort, and this for a person who is by nature sociable, who loves to get together with friends and have a good time.
They became fond of each other, Molly is always asking about Rosie. Molly had a mild stroke a few weeks ago. We went to see her in the hospital. It is too bad I can't show how Molly's face lit up when Rosie came into the room. They didn't need to talk that much, just held hands and let the love flow.
On bad days Rosie is almost locked-in. I would honest to goodness rather be a quadraplegic and at least be a functioning talking head.
But, and this is where the confusion comes in: not all days are bad days!
Remember there is nothing wrong with Rosie’s muscles. She can walk, sort of. It is a bit like when you were just learning to skate: you can go in a straight line but you can’t steer too well and you may need to bump into something to stop.
Strangely enough PD people do stairs really well. Don’t ask me why.
Watch the look on people’s faces when they see Rosie struggle up out of her wheelchair and climb the stairs to the library in the old village schoolhouse. It confuses the H out of folks, and makes some people wonder why she needs that wheelchair. Trust me, she would not be in it if she didn’t.
Rosie is living independently in her own home thanks to Home Support and a team of volunteers. Some people come once a week, some once a month and anything in between. Rosie’s Mom does 2 days a week.
I don’t want to make Rosie out to be a saint. She isn’t. What she ideally would like and what the loose-knit team can give her is not always the same. Both Rosie and the team are learning to deal graciously with issues of boundaries, commitments and occasionally tough love.
But 90% of the time Rosie is bearing her challenging life with remarkable grace and courage. I doubt I could do half as well.
Rosie and I are both Cancers, and one thing we have in common is the famous Cancer loony laugh. The last time I was there I shared some favorite jokes and we both just cracked up and had a great time laughing. After that Rosie found her tongue and entertained me with stories of the time she was in an earthquake in California. The world needs more gelo-therapy! That’s healing through laughter.
I do a shift every other week. The opposite week I do gift Reflexology treatments for a friend who is on home kidney dialysis and his heroic caregiver wife. If I were a saint I would volunteer more than one afternoon a week, but I lack the Mother Theresa gene.
What I do right now works well to prevent burn-out at either place, and I sincerely look forward to seeing both parties.
That great author Anonymous wrote this sappy poem. It describes a person in the throes of self pity going about her day and meeting people with various disabilities. A blind girl, a deaf boy, a man without legs. Each stanza ends with the words:
“Oh Lord, forgive me when I whine.
I have two eyes (or ears, or legs)
The world is mine!”
Seeing Rosie always brings that home in force. No matter how I feel when I arrive there, I always leave filled with deep gratitude for my marvelous functioning body.
Rosie, I honor and salute you.
And that ends this recipe for The Cure for a Bad Hair Day.
Kind of puts things into perspective.
ReplyDeleteI can tell Rosie is a special person--I could see the way she was looking right into Molly's face like she really cared. It touched me.
Yes, I need prospective like this daily since I lose sight often of how good i have it.
ReplyDeleteThank you for reminding me and for sharing this.
Hope you are doing well too!