Coffee Chat with Rory, oh how I have missed you. Truth be told I have missed most of the blogsphere for a long time. Life has been ... complicated .... for a number of reasons. Most days I'm lucky to collect my thoughts and that works our perfectly for today. We're talking collections, things that are our "precious".
If you've glanced over my sadly neglected blog, you can probably guess what I collect. No it's not dust, empty beer bottles or cooking utensils although I do have those in spades round here. It's not books, or music, again I have plenty of both. So what has me in hunched in the corner, hands clutched to my chest, crooning, "My Precious" as I absently caress the object of my desire? (that sounds way creepier than I meant it to) Give up???
I collect stories.The stories of my family in whatever form they may take.
I have thousands of pictures, letters and cards. All digitized. An un-scanned photo album makes my heart beat faster.
I have hundreds of records: births, deaths, census data, military records, baptisms, report cards, newspaper articles and books of family chronicles.
My favourite is probably the recipes, some handed down for generations.
I also collect things in my garden. To the best of my knowledge I'm the only one who still has the little Scarlet Emperor dahlias my grandmother always grew. I grow marigolds and morning glories for my other grandmother. Half of what I grow reminds me of some one.
And sometimes all it takes is a kiss. My great aunt Shirley was always a little on the dramatic side.
The things I could tell you!
Don't forget tp drop on by Rory's to see what everyone else collects. What's your "precious"?
This could also be called, "Why do people have to make it so hard to do good."
Like so many others of us, my Facebook feed has been inundated with the ALS Ice Bucket Challenge. An initiative to raise money and awareness surrounding the neuromuscular disease. It has succeeded beyond anyone's wildest hopes.
This cause is near and dear to me, the person I live with was diagnosed with the ALS almost 2 years ago. I've watched him go from gym rat to being barely able to cross a room in a walker. It is a devastating disease. The median survival rate is 39 months, only 20% survive 5 years. To add insult to injury, his is probably familial. He lost his mother to ALS so knows what is in store for him before the end.
And what is in store. Losing the ability to walk, talk, swallow or breathe on your own. Unable to care for yourself. Dependent on someone else. Locked inside a failing body.
With almost no treatment options, maybe you can imagine how excited and grateful I was to see the outpouring of support flooding across social media. I'm not sure people can understand how truly thankful I am to everyone who took the time to accept the challenge, pass it forward and donate.
The ALS Society has been a God sent. They provide equipment and support to thousands of people living with the disease and their caregivers. We couldn't afford to buy all the equipment they have provided to keep him as functional and comfortable as possible. The caseworkers have helped navigating the medical and social assistance worlds that can be confusing and overwhelming.
Despite all the good, there just have to be "those" people.
To all the people bitching about wasting water I really don't have any words so here is a picture.
Yes, I understand potable water is a problem. Myself, I try not to waste water in my day to day life. I don't, and I bet if you talked to any ALS sufferer or their caregivers, consider one drop used in this campaign to be wasted. If it makes you feel any better, dumping my bucket of water was the closest I got to a shower that day and probably the day after. I'm pretty sure my fellow caregivers have missed enough showers to cover all the challengers and then some.
Pamela Anderson came out very publicly criticizing the organization for animal cruelty in their research. I understand and even support her stance. If PETA's stats are even remotely correct with a 92% fail rate in testing from animals moved to human trials, there has to be a better way. But, the cause is not the organization. The organisation in question doesn't just use the money for research. Finally, you can earmark what your donation is used for with in either the ALS Society or the ALS Organisation. If none of that assuages your conscience, donate to an organization like Lotsa Helping Hands. They provide support to care givers of all types, ALS being one.
In short, you can support the cause and stay true to your own moral compass. We, ALS suffers and their loved ones, don't have time for the medical profession to change it's ways, we need help in the here and now. Had she accepted the challenge she could have helped raise awareness of ALS and her cause by explaining the how and why she donated the way she did. Win, win, win. Instead, well ... am I alone in thinking smug, self righteous bitch? Even though I know that's not fair. She has done tons of charity work.
Jim Riggs came out against the challenge based on religious reasons. God doesn't want us doing embryonic stem cell research. Again, I can understand your objections based on your beliefs but I must have missed that " turn a blind eye to suffering unless they believe exactly as you do," day in Sunday school. This is not the kind of Christian charity I was raised on. Jim, same advise for you as for Pamela. If you want to help, there is always a way that doesn't compromise who you are or what you believe in.
If for some reason the point of this campaign still eludes you, let me spell it out. H.O.P.E. It's been over 70 years since Lou Gehrig died of this disease that bears his name in the public's memory. Were he alive today, his treatment options wouldn't be significantly different than they were then. Let us hope. Stop pissing in the Ice Bucket.
As I was catching up on my reading, I came across this post from Jennifer over at Dancing in the Rain. Jennifer is awesome in all kinds of ways but her posts on dealing with her husband's illness always speak loudest to me.
I started to comment but as it grew to novel proportions, I decided a post was in order. After starting the post, realized one wouldn't cut it, so this will be the start of a few articles. Following up on a promise I made about posting how my other half and I are coping.
It seems like a lifetime ago that my partner was diagnosed with ALS, more commonly known as Lou Gehrig's disease. It's a terminal, degenerative neuromuscular disease. About the time he was diagnosed, a friend of mine found out he had early onset Parkinson's. Between the two, I've had lots of exposure to life changing illness lately.
Jennifer, my friend's wife and I all share one thing. We are caregivers. As I am finding out, kind of unsung heroes. People expect us to be in this role and that we'll somehow make everything work. Don't get me wrong, none of us would be anywhere else but there isn't a lot of support out there if you're taking care of your significant other. It's taken as a given.
The ALS Society has incredible resources that have been put at our disposal: equipment, PSW's, occupational and physiotherapists, a nurse practitioner. The ALS clinic has been wonderful as well; a battery of doctors have been there to help as much as possible. In talking with my friend, I know he hasn't received the same level of help. I'm enormously grateful for the combined efforts these people have made and continue to make on our behalf.
Unfortunately the emphasis is on his physical state. There was a suggestion of counselling, but it isn't a required part of treatment and as such has limited coverage with our health plan. He refused it anyway so a bit of a moot point.There is also no coordination of treatment. The specialists treat the ALS, a GP for general health, a massage therapist, a physiotherapist, a neuropsychologist ... The list goes on. He is treated as his disease, bit by bit, not as a whole person.
As it turns out, there is a very simple reason for this, liability. No one wants to be sued. Every decision is made by the patient. In fairness, everyone has been quite frank about it. The specialists only treat the symptoms of the disease, the GP flat out said he knew nothing about ALS, that was for the specialists. Honest but no less frustrating.
For me, very important to keep a positive attitude around him. Important to keep him in a positive state of mind. It's "crucial" to his well being. Not a suggestion in the world as to how that was going to happen. I'm not a patient so don't require treatment, he isn't required to do anything to support his mental health. Except take these pills, and if they don't work we can add these ones and we can increase the dosage. More frustration.
My health plan will cover 5 therapy sessions. Searching online, I found a support group that meets for caregivers of seniors with ALS, once a month, 2 hours away. I did find an online group that has been very supportive, especially in the early days. I also have an incredibly strong group of family, friends and co workers. I'm lucky.
Being one of the lucky ones doesn't make me feel any less alone in this sometimes. Then I stumble across something like what Jennifer wrote and know some one out there knows exactly how I feel. That this thing we share hasn't got the best of us. It eases the bad days and the good ones are that much sweeter.
I'm on a roll, two posts in a week after months of hibernation. Maybe it's that balmy -20 degree spring weather we've been having. Maybe not? Anyway, time to chat, Coffee Chat with RoryBore.
The prompt this week, What is the one question you would ask everyone you meet?
That's an easy one. I'm a curious fellow. I'm constantly asking people, "How do you .....?
Rory has been barraged with questions about blogging, template design, finding the time to write. My uncles, cousins and father are my go to mechanics and home repair gurus. Mom, my grandmothers and anyone else who cooks have been hounded for recipes and techniques. I have a living, breathing search engine at my disposal. Who needs Google?
There it is, short and sweet. What's your question?
It's been a long time since I last sat down at the keyboard to write for pleasure. I still read along when time permits. Lately I've been missing it more than usual. I looked at my last post, a different Listicle, and I just knew I did not want my final post to be about Miley and Robin. Funny how that works.
Following Robin's prompt, nine more things I just knew.
1 There have been a few times I just knew it was time to go home. Work/school in the morning, but I was having so much fun, consequences be damned. Who needs sleep anyway?
2 When our eyes met, I knew it was all kinds of wrong but I just couldn't deny that spark. You all know what I mean.
3 When I moved to the city for school, I knew I would never go back home to live on my parents farm. It was time to make my own home.
4 There have been a few times I just knew things were broken beyond repair. Something I had done or had done to me that altered a relationship beyond saving.
5 Many times I just knew it was the wrong thing to say at exactly the wrong time. I have a horrible case of foot in mouth disease. I've perfected the art of the apology and learned to just stay quiet.
6 I knew it was time to end a poisonous friendship. Although we had hung out for years, I could only be the whipping boy for so long.
7 I knew it was the right time to do something for myself when I sold the house in Toronto and moved to the suburbs.
8 Dancing at a friend's wedding, I knew it was our last dance together. It took all night but I'm glad I was so persistent. The memory of dancing under a Tuscan moon with you was worth the effort.
9 In the 10 seconds it took for this to happen, I knew I was going to die.
I have no idea how the transport behind missed me but I've never been so grateful to be wrong.