I arrived early at the Common Roots Café for the March Jack’s event, Nintendo Switch Boot Camp. Kyle was setting up.
Alan was there as well and remembered me from a previous Jack's event. Nice. I must really make an impression, I thought, not knowing if it was good or bad.
Kyle started by introducing himself. He told us about Jack, a man who had ‘cut through it’ so many years earlier with his inspiring message of ‘Serving the Caregiver.' This was the mission of Jack’s Caregiver Coalition. This was why Kyle was here, and he served us well that afternoon.
He then introduced Merrick, his son, and our instructor. He wore camo and shades. He had his work cut out for him today. His mission: to teach a bunch of old, video-game challenged guys how to play Switch MarioKart.
Six caregivers came to play, forming 3 teams: 'The Dominators', Peter and I; 'The Winners 2' (long story), Julian and Eric; and 'The Winners', Chris and Alan.
Merrick let us know that mastering Switch MarioKart was serious business.
Early in his teachings – say, 3 minutes in - somewhere around the discussion of the ‘A’ button being the ‘X’ button because the controllers were held sideways, I started to get foggy. I remember something about a trigger making your car 'drift' and speed up if held a certain amount of time. I stopped listening and decided to do what I do when driving in near white-out conditions - grip the wheel and focus 10 feet ahead.
In this case, thumb tightly on tiny joystick, staring at curves and obstructions in the road. That was my strategy. I’m not speaking for the other 3 other guys who weren’t on the winning team, but that might have been theirs as well.
In the end, Chris and Alan dominated on the road that day, but I didn’t leave empty handed.
As Peter and I were discussing poor strategy choices, our conversation was interrupted when Merrick named me the 'Charlie Brown' award winner. Obviously, an ‘MVP’ type of award, I assumed. Jake, my 11-year-old Switch player, will be so proud.
Then the champions challenged Merrick and he quickly reminded them of their rightful place in the video game pecking order.
The dynamic of ‘getting it’ hung thick in the air.
The competition was fierce that day and training was top notch. We all learned a lot, and, in the end, really did want to win.
But the best part of the event had nothing to do with MarioKart or winning or even the ‘Charlie Brown’ award. The best part was the unspoken/spoken stuff that went on between drifts, button pushing, trash talking, and feasting. It was the 'off the track' stuff that meant the most to me that day.
This was a group of caregivers who simply ‘get it’ and were willing to share their struggles as cancer caregivers with others in that role. That’s a rare thing and well worth a trip across the river.
As I was leaving, I ran into one of the guys and flashed my Charlie Brown cup. ‘Look at that,’ I beamed.
He smiled. ‘That just means you were the worst player.’
I knew that. Jake loved the cup, though. He didn’t need to know.
By the time Tracy was tested for multiple myeloma, we were months into utter panic. Her back pain was worsening and several weeks before she had cracked something in her back when standing up at our son’s baseball game. She drove herself to the ER and was given pain killers and told it was a muscle cramp. The next morning, she fell on the kitchen floor and I couldn’t pick her up.
When the diagnosis finally came, I was in a fog of denial and panic.
It can’t be real! How would I do it? There's no way I can care for Tracy. And what about the kids? And then I read about the high number of families that go into bankruptcy...
There’s so much I need to do: kids sports, healthcare, financial assistance, cleaning, cooking, buying groceries, Tracy’s appointments, getting someone to watch the kids.
I’m washing the dishes at 11 pm, worn out, and only remember that I got up at 6 am. Tracy says she needs help going to the bathroom. She can’t walk on her own. Five fractures in her back. It’s before we have a walker or cane. I bend over in front of her chair and she wraps her arms around my neck and I slowly stand, with the full weight of her body straining the middle and lower parts of my back. She screams as the freshest cracks in her back are stirred. She stands and I help her to the bathroom, knowing that if she falls or I drop her, her vertebrae could crumble. Any personal care in the bathroom is my job - she can’t turn her body at all.
I’m a long way from calling my neighbor at 1 am asking her to come over to stay with the kids so I can take Tracy to the ER. I’m a long way from signing up for the Meal Train so we don’t have to eat McDonald's 3 times a day. I’m a long way from setting up a GoFundMe page. I’m a long way from jumping to the front of the line at the ER and saying, "My wife is on chemo and has a high fever!"
People were asking to help and I was still telling them, "I got it - thanks anyway." I hadn't yet filled out those forms for financial assistance. I hadn’t scoured the internet for other means of assistance. I hadn’t yet explained the seriousness of Tracy’s condition to my boss. I was still ignoring the bills. I was a long way from Jack’s Caregiver Coalition. I hadn’t yet said "YES! I do need help!"
I hadn't yet been bold. Damn, I wish I had been so much sooner.
By: Mike McGarry
Mike McGarry is a caregiver for his wife, Tracy, who has multiple myeloma. Mike and Tracy have 2 boys, Joseph, 13, and Jacob, 11.
When friends and family hear the news - they will almost immediately want to help. This is great, of course, because we all need help. But it's often difficult to figure out what help we need - and for the helper, how best to help. Without any guidance though, your family and friends may choose something on their own and their version of 'help' might not be what you want or need.
For example - many people send flowers or plants. This is lovely, but plants need to be planted, watered, trimmed and maintained - otherwise they turn into a vase of dried, decaying and smelly twigs. What most people don't realize is that, when you're busy caring for your loved one, you definitely don't want/need more things to do - and plant maintenance (for me) was one of those things I didn't want to do.
Other friends might make and send food. This is GREAT if you're not handy in the kitchen or if you have other family members who require meal preparation. If so, add it to your request list. In our house, though, food is a tough thing to request because my wife is sensitive to gluten and I'm allergic to dairy. Any food items arriving at our house were quickly eliminated.
Thankfully, there is a very easy/quick way to manage this and it comes down to communication. Here's what you do:
It starts with a Post-It.
Everyone gets a 5x7” pad of Post-Its. We write down the things we want to talk about—one topic per Post-It. Then, all the topics go up on the wall. Everyone gets 15 seconds to “pitch” their topics to the group. If some are similar, they get combined. Some subjects we’ve covered are: worrying about our spouse dying, intimacy and cancer, feeling guilty as a caregiver, and how to help our kids adjust to their parent having cancer. The Klatch is democratic. We all get 3 votes to allocate however we want. Everyone marks their votes on the topics they would like to discuss. They can put all of the votes on one, or divide them up. Once the voting is done, we add up the tallies. The topic with the most gets discussed first. Once we are done with that topic, we move on to the next most tallied subject.
We have a lot of ground to cover, so we stay on task by setting a timer. We begin by talking for 8 minutes. Then we vote again. Do we want to keep talking? Or, do we want to move onto the next subject? We take a quick thumbs up/thumbs down poll. Thumbs up means we keep talking for 4 more minutes before voting again. We know the conversation is over when the majority votes thumbs down.
After we’ve discussed each topic, we lock in the learning. What resonated with us? These are the key takeaways. Every participant is given a Jack’s Notebook in which to take notes (if they want). So they often add things they hadn’t thought of to their notes at this time.
We move through as many topics as time allows. Although there have been times when one subject takes up most of the time because it is so important to us as caregivers. The conversation flows right where the participants want it to go. We often laugh together. We also can get very deep as we share with one another our experiences and what we’ve found works for us.
Some of the participants have just found out their loved one has cancer. Others have been living with it for years. Each of us has something to offer. Each of us has something to learn. The Klatch is really a place of exchange. We come in with a burden, and leave having exchanged it for encouragement, resources, and new friends.
The Challenge Tracker 2,000.
Before everyone leaves, we challenge ourselves to do something. Anything. It might be taking our partner on a date, or paying for a maid once a month to make life easier. It might be returning to the bowling league you miss so much, or having a difficult conversation you’ve been avoiding. These challenges are easy to forget and push aside in the busyness of life as a caregiver. So we enter them into an online form that helps us hold each other accountable to do what we said we were gonna do. We call it the "Challenge Tracker 2,000"!
I challenge you to check out the Klatch, are you up to the challenge?
A message from Kyle Woody, a Jack's Founder & Executive Director
I'm excited to announce that I've gone to work for Jack's full time, continuing to lead the organization as I have since 2014 when we were founded. It's my hope this news will further inspire all of you that have joined us in our mission, we want you all to know how serious Jack's is. Our mission is no longer just something we work on during nights and weekends or when it's "convenient." It's something we're always working on.
Our recent "Extreme Sandbox" program in October is a perfect reminder of why we exist. We had the privilege of bringing a group of men together who've collectively had decades of experience caring for their loved ones with cancer. A group of men who haven't, until Jack's came along, had a community for them. Jack's understands what the powerless frustration caused by losing control to cancer does to a man. So we gave these men the controls of powerful machines and challenged them to annihilate the "Cancer Car". They didn't disappoint! What we do is simple really - our hospitality brings these men together, and together they improve.
And as we prepare for November, National Family Caregivers Awareness Month, we have more exciting news to share. Our board is growing. We're launching a series of Twitter Chats titled #Menwhocare during which we'll moderate a national conversation on the subject of men who are caregivers. And we're launching a Podcast that's on a mission to inspire the world to reconsider what men are capable of. Plus we'll have our first ever program at Prince's place!
I'm inspired by Prince and the story of his performance at the 2007 Super Bowl. Largely recognized as the best Super Bowl halftime performance in history. Who could forget Purple Rain in that huge Miami rain storm? But did you know that before the show Prince was warned about the numerous risks of performing in that storm. When asked about whether or not to proceed, Prince responded,
Can you make it rain harder? - Prince
How bold and confident the guy was to rise up and just get stormed upon, to bring what he brought to that challenge.
At Jack's we believe every man has the potential to face the challenge of cancer caregiving as boldly and confidently as Prince faced that Miami rain storm.
And while we're inspired by Prince our story isn't about people like him. It's about the lives of everyday people like you that live in your community. Everyday people that wake up every day and face something much more sinister than a storm.
All our best,
“One is the loneliest number . . .” begins a popular 1960’s song by Three Dog Night.
But 2 can be the loneliest number when your partner has cancer.
Treatments left Cindy* and her husband stranded at home and away from family and friends in order to keep germs and illness at bay.
We were such social people, and suddenly we didn’t have the same lifestyle anymore. It was incredibly isolating and I was constantly conflicted and guilty when I would get together with friends.
Cancer Changes a Partnership
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Recently Aaron emerged from our Axe Like a Bad Axe Workshop as the supreme victor. We visited with him to learn more about him and how he pulled off this incredible feat.
Home is St. Louis Park. I have lived in New Orleans, Chicago, and San Diego as well. But the Twin Cities feels like home to me. I once took second place in a tough man competition, ran a 1/2 marathon, and won an organized debate...within 16 hours of one another.
I feel like Columbus must have felt. Continuing the metaphor, I know the Earth is round (so hey, there HAS to be a way, right?)...but have no idea what I am sailing into. I have what can be deemed "convictions" as to the outcome (we are midway into radiation with good prognosis), but I suffer from what is sometimes termed "Knightian Uncertainty" - I simply do not know what I do not know about how this will all turn out.
The Axe like a Bad Ass Workshop was clearly the single most important tournament in the history of the world, and I just happened to be victorious. I won it ALL baby. But seriously, it was the pleasure of learning a ridiculous, absurd, totally irrational activity in our break-neck era of progress and technology, and I think we all loved every second of it.
I also participated in Ice Fishing, which was a blast...basically an excuse to stare at a bobber and drink beer. There was also the meat cutting workshop as well. Super educational and fun.
(Insert boilerplate proathletespeak) "Well guys, I just have to thank the other players, they were just great today, and I just was lucky I guess, aw shucks wish we all could have won". Ok, maybe not that...I was just happy that we all could have some unapologetic fun for zero reason. Winning was irrelevant (unless you lost...which you all did.). :-D
Its funny you ask...I actually trained in Svalbard with some locals. We threw axes at the flying dragons who inhabit the volcanoes. No wait, that didn't actually happen. I think most of my "skill" can be attributed to the relaxing atmosphere and having some time to just let go of reality for a little while. That and the fact that I am physically perfect and the pinnacle of athleticism.
No human in our position could have exited Bad Axe and thought "what a terrible idea and I shall never do these types of things again". Jack's itself is essential for taking the logistical reigns and facilitating the entire process of unwinding. I alluded to Columbus's journey in a previous question...its good to have shipmates who are in the same boat, facing similar prospects, dealing with similar fears. So second star to the right, gentlemen, and straight on til' morning...