Questions & Answers…

Through all my correspondence with friends, family, and those suffering with Lou Gehrig’s disease, I get asked a lot of questions. This week I’ll answer the most frequently asked and try and provide a little context. Some are very easy to answer but others require digging a little deeper, so get ready…

The standard question that comes from most people is: “How are you doing?” I translate that to mean: “What limitations do you have and are they getting worse?” (It could also mean: “How’s your mental state?” and I’ll deal with that farther down this post.) The easy answer is: my left hand still loses strength. It’s occurring more often, but I’m continuing to battle it on a daily basis with exercise and strength training. At best I’m at 50% of my former power and at worst I can’t pick up a cell phone. This doesn’t limit my daily activities but I do tend to drop things a lot. The rest of my body still has recurring fasciculations and occasional cramping, but I manage this by reducing the intensity of my workouts and being careful not to overwork my body.

On occasion I do have a little trouble putting on a long-sleeved shirt and have to rely on Amy to get me “unstuck.” She was at work the day I needed her most. Leaving school, I needed to go to the bathroom but decided I could make it home (about a 20-minute drive). By the time I got to my house, that need had turned into a must. Getting into the house was no problem. Making it to the toilet, mission accomplished. Getting my pants undone, oh no! Did you realize you are probably a left- or right-handed unbuttoner? I learned that day that I’m a lefty when it comes to buttons and my left was not working. For those of you who have kids, I’m sure you can relate back to when they would do the really have to go dance and you would tell them to wait. Well, I was doing my adult-version of that dance and adding in a few adult words too. Things came out fine in the end but it was a very close call.

Most of you have seen or heard about the ultimate effects of ALS on the body. I am so blessed that most of these symptoms have not yet affected me. And if I get my prayers right, I believe they never will. Mustard seeds can move mountains and I’m giving mine all the fertilizer I can find… with a lot of help from all of you. (Over the years I’ve heard numerous times that I’m full of BS and I’m putting that to good use now.)

The mental aspect of fighting this disease is a whole new ball game. I’m talking now with a newly-diagnosed mother and she’s understandably having a very hard time coping with what the future holds. Scared of not seeing her children grow up and even more concerned that they will have to care for her. My advice to her is: Let it out, let it go, then repeat.

Since the day I was told I had ALS, there have only been a couple of days that I had to let it out. The first happened over Christmas break in Florida visiting Amy’s family. While taking a shower, the picture of what the future could look like for me was overwhelming and I whined, cried, and prayed, feeling so sorry for myself. It didn’t last long, but it was very intense. Ultimately I was able to pull myself together and just look at all the blessings that day had in store for me. I was determined to let tomorrow worry about itself. It’s happened on one other occasion over the last couple of years, but I found myself embarrassed worrying about something that I have no control over when there are so many things I can control right here, right now.

A tough question I get asked is: “Are you afraid to die?” The short answer to that is: “No” – but it comes with a caveat. When you’re told you’re terminally ill, thoughts of dying can’t help but creep in. I’m so grateful that Amy and I returned to our faith years before all this began. It’s helped me put my trust in the belief that life doesn’t end here and something better awaits.

One of my favorite ways to “think” myself to sleep is trying to envision what Heaven looks like. After reading that, you may find the caveat to this paragraph silly but….while I’m not afraid to die, I am afraid to approach those Pearly Gates without Amy. Without her, I’m sure I’d never get to see Heaven, so being invited inside wouldn’t even be an option.

A couple of months ago we saw MercyMe in concert and Bart Millard, the lead singer, paused to tell a story about his father-in-law who passed away from leukemia. It’s a beautiful account that opened my eyes to what the end/future may look like. We both walked out of the venue full of peace for what we have today and what is yet to come. Here is a link to the video of Bart sharing the story with the audience.

And just a fun song about how I’d like to see Heaven.

Some ask: “Are you sad?” or “Do you cry?” I am sad and I do cry, but not for myself. My sadness is for those who have not lived as full a life as I have thus far. And I’m sad for those tasked with caring for patients of ALS. The thought of losing a son or daughter breaks my heart. The thought of not getting to see your kids graduate, get married and have grandchildren is something I just can’t comprehend. I want a cure for this disease for those people more than anything. Refusing to feel sorry for myself drives me forward and allows me to enjoy each and every day I have left.

I am choosing to die only once, and none to soon.

Many have asked how they can help, offering time and money. At this point we don’t need either (but thank you!). Our social calendar has been very full going to see friends and family and entertaining on our deck several times a week. But, here’s a plug… On September 20th, we will be putting together a team to do the ALS Walk for Life at Soldier Field. I will be talking a lot about this in the weeks to come but for now, put a save-the-date on your calendar. For those who want to give, that will be a great time to do it. The Les Turner ALS Foundation does a lot of great work across all the fields associated with ALS. Just an FYI statistic for you – it costs those in the advanced stages of ALS around $250,000 per year for their care, much of which is not covered by insurance or Medicare.

Another question I get: “Why are you doing this, being so public about your disease?” As I’ve written before, it’s nothing I wanted or intended to do, it’s just something that I felt compelled to do. If I could just help one other person find joy in their life, it would be worth it. What I’ve found is that I’m being rewarded over and over again by those who appreciate my attitude and others have said they find me to be an inspiration. Truth be told, you all inspire me to be a better person everyday. To live by my motto of: Find joy wherever you can, then share it.

I found a little joy today in this old Forrest Gump clip:

I’m hoping to collect as many boxes of chocolates as I can and sharing them with everyone.

And the final question to be answered today is: “What keeps you going?” This is a fun and easy one to answer. First and foremost, more time with the love of my life, Amy (and Diesel, he’s welcome too). That means more travel, more sunsets, more evenings by the pond, more nights on the couch watching mindless TV, and many more mornings on the deck drinking coffee together. Maybe someday we’ll actually get that house in the mountains built. (Have I mentioned we’ve got a Mustang Dark Horse on the way?) As if that’s not enough, I’m excited to keep trying to help others that are going through such hard times. Providing a little spark and joy for their days, paying back just a few of the blessings that have been granted to me over the years.

One quote from FDR seems appropriate this week:

And I’ll leave you with a song that reflects exactly how I feel:

(change the lyric “blondes” to one curly-haired brunette)

I dug a little deeper this week. Thanks for hanging in there with me. I pray that you find a little joy in your life everyday this week.

God bless.

Coach