Same Chair, New Day, Let's Fire The Money Cannon Comment Count

Ace January 11th, 2018 at 10:40 AM

I’m sitting in the same chair right now, but I'm in a different place. Since publishing the post about my experience with Chronic Fatigue Syndrome on Tuesday, I’ve received hundreds of messages of encouragement, heard from many others who shared their stories of success and struggle as a patient or caregiver, and connected with some remarkable people. I’ve tried to get back to as many as I can. The response has been overwhelming and uplifting and freeing. I’ve cried a dozen times since Tuesday and will cry a dozen more by tomorrow; each tear feels like letting go of a secret that had to be told.

I did something last night that I’ve never done before, though now I wish I had thought to do so. Before going to sleep, I sat on my bed, closed my eyes, and pictured the people who support me, so many of whom I only know through their Twitter or mgoblog avatars, filling a room around me. I was taken aback by the mental image I drew, the size of the crowd, and especially the way I found myself lifted off my feet and carried through waves of friends looking at me with love in their eyes. The last time I daydreamed so vividly I was listening to Giant Steps in a bus with no air conditioning on a 100-degree afternoon. I was 17, on a class trip, an ocean away.

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Tuesday’s post was about my struggle, but it goes so far beyond me. As anyone with CFS can attest, it takes a village to get through this, or at least an incredibly tight-knit and tireless support system.

There are so many people I’ve befriended through work or Twitter, many of whom I’ve never met face-to-face yet I consider some of my closest confidantes. I started listing them all and realized sometime around the second Craig that I had too many people to thank in one space. Staying connected through social media helped me maintain my sanity(!) through some lonely, difficult times. I got needed distraction, helpful advice, delightful companionship, and a broader view of the world and the people in it than I ever thought imaginable from one’s own room.

I’ve mentioned this before and embarrassed my coworkers at MGoBlog but I cannot say it enough: not only is there nowhere else I’d rather work, I’m not sure there’s anywhere else I could work, certainly not all the way through these last six-plus years. The photographers have adapted when I’ve missed games on little to no notice, making sure we had a suitable setup for each recap. David drove me around the state to high school games for two seasons, and drove even more to film games for me to analyze at home when I wasn’t up to going out.

The other writers have never hesitated to cover for me, whether it’s Seth taking the time-consuming opponent film posts off my hands, Adam writing the special teams UFR early to fill a time slot, or Alex filling in for a hoops recap when I could no longer keep my eyes open. Brian had no idea what he was in for when he hired me, yet he’s never wavered in his support, and instead has gone above and beyond to make sure I have a comfortable present and future.

While I mostly keep my childhood and college friends out of it, because it’s nice to be related to as just another person, I keep a tight circle of people I cannot imagine being without. They provide a sense of normalcy in a life that often lacks it. I’ve had a friend drop everything on a weekday afternoon to drive over to my house when I felt potentially suicidal. It was nothing, he said, but in that moment it was everything. You all know who you are. Please forward this to the sane ones.

My girlfriend of over a year had no idea what she signed up for when we started dating, but she’s not only stayed by my side, she has a genuine curiosity in learning how my illness works and what she can do to help. On Tuesday, she came over just to sit with me while I worked and made a long-overdue grocery run for me. Again, it was a little thing, but for me it was like she’d moved a mountain out of my path.

I mentioned my housemates in Tuesday’s post and how they’ve kept the place livable while I’ve moved from bed to couch to chair and back. I’m much less effusive in person than in my writing, so I don’t thank them enough for what they do. That especially goes for my younger brother, who’s one of my closest friends and so much more generous than even he realizes. He’s cooked for me, picked up medication, driven me around; more importantly, he’s the only person I know with an innate sense of when I need to sit with someone in silence, having some companionship while I deal with whatever it is. He’s gone from my goofy little brother to someone I look to for advice and inspiration.

Finally, there are my parents. As I’ve mentioned, my dad suffered from CFS for nearly three decades, and over the last year he’s finally back to a point where he’s living a normal life. I cannot imagine going through this without him mapping out how to live with an illness so few, including doctors, know much about. As a child, I watched him build a business and support a family while seriously ill and fighting a protracted workman’s compensation battle because the legitimacy of his illness was in question. As an adult, I’ve learned from him how to take every twist and turn of CFS without losing hope, and he’s led the way in finding the doctors who can make me well again.

The significant others of those with serious illnesses so often get overlooked even though their battle is every bit as difficult, in no small part because it’d be so much easier, and so understandable, to walk away. My mom took care of everything in the house, and I mean everything. She shouldered the burden of raising two children while her husband couldn’t even get behind the wheel of the car. She put a home-cooked dinner on the table every night. She made it look so effortless I thought it was normal.

It’s not easy to live with someone with CFS; we don’t go out, we’re often hyper-sensitive, we’re definitely not helpful around the house, and there’s usually frustration and depression and even rage bubbling just below the surface. My mom moved heaven and earth to make it work, then tapped into something even deeper to care for two sick adults when twice, after college, CFS forced me back home.

I’m tremendously blessed. I wouldn’t trade this life for anything. If there’s someone with more love in their life, they are truly rich. I learned long ago that one can live a fulfilling life while limited by illness.

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Several of you have asked what you can do to help. Research and awareness for CFS lags far, far behind other illnesses with a comparable (or even much smaller) number of patients. So many people who deal with it aren’t as fortunate to have the resources at my disposal; believe it or not, I’m healthier than most CFS patients, part of a relatively small number able to work at all. I have access to world-class doctors and a community whose generosity seemingly knows no bounds.

I’d like to test that. Brian has given me the go-ahead to set up a Crowdrise fund for the Solve ME/CFS Initiative. I’m hoping we can raise $5,000, in honor of my parents, to support CFS research and push for a cure. I haven’t told my dad about this; I told my mom it was just in honor of my dad when running the idea by her. I’d love to surprise them. The link is here. Here's a widget:

In Honor Of The Anbenders, Let's Find A Cure For CFS on Crowdrise

If you have the time, I’d also appreciate if you watched the documentary that inspired me this week, Unrest. It’s airing on PBS (check your local listings) and free to stream for the next couple weeks. It’s a remarkable, raw, unfiltered look into the lives of those with CFS and those closest to them, made by a woman with CFS who created the film largely while working from bed.

Thank you all for being a community I’d even consider asking to do this. This has been a powerful and reaffirming couple of days. Let’s keep the good going.

UPDATE: Since we're already 60% of the way to the goal in the last two hours—thank you all so, so much—I figured I'd provide some incentive to keep going. If we hit $10K, I'll get the Wild Thing haircut when I return from Alabama next week. Quinn Nordin didn't get the chance to make it happen but perhaps your generosity will.

Comments

Lakeyale13

January 12th, 2018 at 8:23 AM ^

Just saw this.  Ace, you have my support and prayers.  I suffer from Ulcerative Colitis, and can sympathize and empathize with your condition.  Continue to know you aren't alone.  You are valued and loved by people you haven't even met...such as myself.  God Bless you my friend.

Michael Scarn

January 11th, 2018 at 10:54 AM ^

Meant to comment on your moving piece from Tuesday, but failed to.  Next time you visualize all your supporters around you, please be sure to count me among that bunch.  You're an inspiration, my dude.

His Dudeness

January 11th, 2018 at 11:10 AM ^

A Giant Steps man, eh? Well done.

Good luck to you.

We never know just how great the suffering behind a stranger's eyes. We should remember that in our daily interactions.

Code-7

January 11th, 2018 at 11:12 AM ^

Keep on fighting, Ace. For as much appreciation you show for everyone having your back, we all have the same appreciation for all that you have done and continue to do.

theytookourjobs

January 11th, 2018 at 11:21 AM ^

This is the greatest thing I've ever read on this blog (or anywhere for that matter) in the 10 plus years I've been visiting it.  Thank you Ace.  If people really take the time to read this and take it to heart, you've given us all a priceless message and piece of advice on how to treat each other as human beings!  God bless you bro and thank you so much!

Kewaga.

January 11th, 2018 at 11:59 AM ^

writing this Ace.  I will add you to my prayer list, it's very, very short so you'll get more bang for the prayer!  Oh, and threw in a couple bucks as well.

 

 

PS:  Brian, thank you for being the type of employeer many of wish we could work for!  Your priorites are in the right place and have not gone unnoticed. That Beveled Guilt button is calling my name.

Mote59

January 11th, 2018 at 11:34 AM ^

I'm not a regular poster, but am a daily visitor here.  I enjoy your posts on all things Blue, but this is by far the best!  I will keep you in my thoughts even though I believe you got this.  Keep Doing Work!

Hathaway

January 11th, 2018 at 11:38 AM ^

Powerful message. It's brave of you tell tell your story in such intimate detail. When life's happiness are denied  due to illness it feels like you are being cheated.  Keep up the good fight.

k.o.k.Law

January 11th, 2018 at 11:40 AM ^

is to let someone else do something for you.

Advice form my father, whose auto-immune disease eventually got him. 

48 surgeries for rheumatoid arthritis, which even attacked his heart.  He never complained.

Thanks for the courage to put your life out there, and to give us the opportunity to do something.

You can see how so many people you have not even met are praying and pushing for you.

Visualize the Big House, filled to capacity, with your supporters, cheering and shouting,

GO ACE!

We are with you!

You can do it!

God bless.

 

03 Blue 07

January 11th, 2018 at 11:44 AM ^

Ace-

I've been a fan of your work since you joined the site, and I enjoy not only your writing, but the perspective you lend to the MGoPodcast. Keep up the fight, and know that you have lots of support in the MGoCommunity. Everyone is pulling for you.

Even though I know this will be a lifelong struggle for you (and obviously, you are fully aware of that and it is likely a thought which can be overwhelming), the real enemy is losing hope.  Try to focus on the good moments you are blessed to enjoy. One great moment of transcendent joy can make an entire year's worth of pain feel worth it. Live in those moments of joy and hold on to them so they can buoy your spirits through the difficult times. And keep fighting. You can do it. 

Best,

03 Blue 07

4EverBlueGirl

January 11th, 2018 at 11:42 AM ^

Thank you so much for sharing your story. I have an aunt with CFS and honestly, I learn every day from her. You have opened the eyes of many and I will glady donate.

 

Thank you Brian for doing the right thing as an employer.

rc15

January 11th, 2018 at 11:54 AM ^

Sorry to hear what you’re going through Ace. I know it’s only one of the many difficulties you mentioned, but you should look into getting the app Shipt for groceries. Someone will go to Meijer for you and shop, and bring them into your house for you. No cost per order, $50-100 per year depending on if you get a deal when you sign up.

I’m completely able to go to the grocery store and I choose not to because I don’t think the 100 hours a year spent there is worth $100. For someone if your shoes, I think it’d be extremely helpful for not only food, but if you need something from the pharmacy area but can’t make it out to get it.

Wanigas

January 11th, 2018 at 11:52 AM ^

"I did something last night that I’ve never done before, though now I wish I had thought to do so. Before going to sleep, I sat on my bed, closed my eyes, and pictured the people who support me, so many of whom I only know through their Twitter or mgoblog avatars, filling a room around me. I was taken aback by the mental image I drew, the size of the crowd, and especially the way I found myself lifted off my feet and carried through waves of friends looking at me with love in their eyes." 

That is beautiful, Ace. Thanks for sharing. I believe you are firmly on the road to recovery. You can have as much love as you need from this Wolverine. There is no greater healing agent. :) 

Go Blue! 

SpinachAssassin

January 11th, 2018 at 12:13 PM ^

I've sought solitude over the last 14 months to cry in peace, each time coming back just a bit stronger. The moment before is the hard part. The moments after are indescribably hopeful.

It takes some serious courage to open up the way you have. Bless you for it. Stay with it and please keep sharing.

mgotom

January 11th, 2018 at 12:24 PM ^

I've been reading MGoBlog for a long time, but this is one of the few times I have been moved to post anything. You are a good and courageous man, Ace, for being so open and brutally honest about your illness.

It is really moving to hit "refresh" every few minutes on the fundraiser link and watch the amount go up by hundreds of dollars. Michigan money cannon, indeed.

soniktoothe

January 11th, 2018 at 12:31 PM ^

Ace, I told my wife about your post yesterday and how moving it was.  She has been struggling with an undiagnosed condition that is seeming more and more like what you have been going through. 

Thank you for sharing and for reaffirming that those who struggle with ambiguous, misunderstood and difficult to diagnose conditions are suffering just the same or worse than others.

oriental andrew

January 11th, 2018 at 12:34 PM ^

I am very touched by your relationships and love that surrounds you. I can attest to the fact that it's not easy taking care of an ill relative for years. I'm not going to pretend it's harder on the caregiver than it is on the one suffering through the illness, but the fact that your family and close friends have worked their lives around yours is a testament to both them AND to you. You wouldn't see that if you weren't worthy of their love, honor, and respect. 

Stay strong and keep the faith. 

DancingWolverine

January 11th, 2018 at 12:54 PM ^

This post and the donation drive can be a bit of a reminder that, while there can be rough comment threads after some rough games, there are also thousands of lurkers on MGoBlog who are reading it religiously and only stay quiet until you need something back from us.

Thanks for the many years of quality articles while I've been lurking.

kanbe

January 11th, 2018 at 1:19 PM ^

Ace, thanks for being so supportable. You bring courage and thoughtfulness and generosity -- good things to bring to the party. That makes it easy.

Thanks for thinking of the 2 million people in this country wrestling with what you are wrestling with. They tend to be without much of a voice given being housebound. You've clearly found a way to have a voice.

The paltry $5M from the CDC for 2 million affect people is a policy decision that will fall far short at cracking the code on a complex illness. $2.50 per person really?

Thanks for being part of the solution and helping there be research and advocacy for those who are sidelined and their families.

What a great anniversary gift.

Thank you, thank you, thank you.

Dad

I'm Batman

January 11th, 2018 at 1:20 PM ^

My girlfriend of the past seven years has MS, Fibromyalgia, CFS, and now they are testing for Chrones.

I can personally attest to how hard it is just physically and emotionally supporting someone with any of those afflictions. Let alone how hard it is for them to live with it.

So i took personal joy in you thanking the support system around you. 

Quite frankly, it might have been the only thing preventing me from making a crappy joke about Country Fried Steaks, and how CFS was the most delicious sounding of the diseases.

Michigasling

January 11th, 2018 at 1:40 PM ^

...so a cause that means a lot to me.  And thought I brought you over the top!  But came back to see your update at the bottom.  Now someone else has a chance to bring you over the new top.  And someones else to pass over the next.

I've watched my buddy's frustration with the many doctors (and even former roomates) that think it's all in her head, and whenever I send her links to articles of new research and (almost as important) new acknowledgment of the reality of the disease, she sighs, knowing that it still doesn't change the reality. As her upstairs neighbor, I see her on her good days, walking her dog and smiling, chatting with the fellow dog-walkers, or on her good evenings when she might come up to chat and join me in watching a DVD.  But when I want to invite her to join me as my guest for something at a date in the future, she can never be sure how she'll feel that day and doesn't want me to waste an opportunity I could share with someone else. 

Was just going to call and see how she feels today so she could join me for a film I know she wants to see. It's warmed up a bit here in NYC, so maybe she'll be in the mood to venture out.

All my best to you, Ace.  I've paid close attention to your situation, whether or not I knew the full diagnosis, because I have food intolerances that I didn't know about or understand during my childhood. A much lesser problem than yours, but I understood the feeling that it had to be all in my head, because I was the only one in my large family who got food poisoning after dinner. Of course we didn't talk about the symptoms in those long-ago days, and the major mystery culprit was a very common bland food that you eat when you HAVE a stomach ache. Thanks to UofM's Allergy Clinic, I finally figured it out.  My college roommate had "normal" food allergies-- i.e., histamine reactions that are more obvious, with rashes and danger of anaphylactic shock, rather than the prostaglandin reactions that cause "digestive distress."  She came back from the clinic once to tell me she and the doc were talking about unusual food allergies, and he said "I have a patient who's even allergic to potatoes!!!"  How nice to know I was special.  And even nicer to know it was something so easily fixed.  Stop eating potatoes. (And the other things I eventually figured out.)   And knowing that it wasn't all in my head. 

CFS is so much more complex and debilitating.  Here's to spreading awareness and, of course, finding a cure.  

 

 

Ace

January 11th, 2018 at 2:09 PM ^

Thank you so much for allowing me to provide this gift to my parents, raise some awareness, and help move us closer to a cure. I'm once again overcome with emotion. I feel so much better than I did on Monday. There is real power in opening up, and even more so in being received so openly. I can't thank you all enough.

(Hi, Dad. You're welcome. I love you.)

DOBlue48

January 11th, 2018 at 2:10 PM ^

Ace,

I learned this from a friend who was helping my wife grind her way through breast cancer as a reluctant patient. DON'T take away the joy of helping from those willing to do so.

May your request for funds have orange hair!

DOBlue48

January 11th, 2018 at 2:12 PM ^

Ace,

I learned this from a friend who was helping my wife grind her way through breast cancer as a reluctant patient. DON'T take away the joy of helping from those willing to do so.

May your request for funds have orange hair!

Double dip: first ever. Dont post from phone much.

RedRum

January 11th, 2018 at 2:17 PM ^

I guess Brian is actually a good guy. Who knew? (in jest).  

Ace, you are taking an obsticle and turning it into a positive.  The world is better for it - You were brave and now this community is more educated and, hopefully, the funds will find a viable treatment.

GO Blue!

GoBlueFutball

January 11th, 2018 at 3:56 PM ^

I've always wanted to comment on these posts Ace, but never known quite what to say.  In reflecting on your most recent posts what is stricking me is the benefits of opening up, and also the tremendous difficulty of doing so. No matter how many times you open up, in some ways it doesn't get easier, because in the moment there is often a sense of shame.

I too have a chronic condition, fibromyalgia, which is mild compared to many others with the condition, but still hard to deal with.  My sporting love is soccer, and I've played consistently, and at times at highly competitve levels since I was 5 years old.  I also jumped into the obstacle racing thing right from its founding, in fact I was a participant in the first ever Spartan Race.  I finished just outside of the top 300 in the country one year.  This is not to brag about my achievements, but to say that when the fibromyalgia acts up it is extremely difficult despite the conditon to not expect my body to be able to perform at a very high level.  I think this is often missed in the struggles of people with invisible or less visible chronic conditions.  There is a quote that goes something like "pain is proportional to difference between one's current state and one's expectation".  What might seem OK to one person could be painful to someone else. 

This also tends to lead to, in my experience, a great deal of living in ones own head.  There are many reasons for this.  One is that we are trying to redevelop and come to accept a revised image of ourselves.  This is compunded by the fact that chronic conditions also are often cyclical, or variable, so this is a never ending process.  Another is that the mental effort of dealing with it can drain you, and at time make you extremely cranky, lashing out at an offer of help not because you are ungrateful for assistance, you crave anything that can lessen the agony, but because it makes you question whether you need to revise your self image even lower yet again.  It makes you question your ability to care for yourself.  Because as much as assistance is necessary and benefitial, there is so much of a mental aspect that goes along with chronic conditions that you also have to become self relient, at least in some ways.  I find I try to hold onto this self reliance as a key piece of my self image that I want to maintain.  No one wants to feel like if their support went away that they would fail, so I tell myself, and strive to ensure, that I could do this myself, even though I know I don't have too.  Thank you to my wonderful wife for all of her help and tolerance.  But sometimes her offers of help serve as a question as to whether I could do it myself.

Getting to my point, this can all lead me not to share what I'm feeling, to close off and wallow.  I hope that sharing this can help remind other chronic suffers of this cycle and encourage them, and myself to share, even when it is cripling to our self image.  I also hope it will encourage a bit of understanding in caregivers and others.  Accepting the crankiness and anger of those with chronic conditions, and knowing how to help can be hard.  Know that despite our outward and in the moment response, we are always grateful for any offers of assistance.  One other thing I've found helpful is a regular check in, then I know the question isn't related to the vibe I'm giving off, but just an acknowledgement of the condition, and of me, and an opening to sharing.

Good luck to all the chronic condition patients, care givers, freinds, and Ace!  Thank you all for sharing,

Jonathan