Let's Ride '25

I have written before about Bike MS. My diagnosis led to a lifestyle change that featured more physical activity and exercise. One of the early practices was bike riding which made feel better both physically and mentally. It also brought me to Bike MS, the nationwide event in which riders fundraise for the National MS Society.

I have completed six different bike MS events and each time I have thought of them as a celebration of life; a celebration of the fact that I'm still able to be active and do great things despite my illness. This year's event in New York City is 2 months away and it's around this time that I traditionally  begin my fundraising. After missing last year due to recovery from a tear in my carotid artery, (yeah that happened too) it's time for another celebration of life.

Except I don't want to do it this year. 

Over the past few months I have been struggling in a place that I haven't prior. While fatigue, neuropathy and assorted physical issues have been with me every day since 2016, the past few months have been new and challenging mental and emotional struggles.  While maneuvering my way through these difficult few months, I have tried to pinpoint why it is that I've been having these struggles. There are many answers to this question but the most direct one is that I'm tired. But that would be too simple.

I'm tired a lot because of, you know, the Multiple Sclerosis but in this case it's more of a long-term fatigue of my life with a chronic disease.

Chronic disease doesn't go away; it’s always there. 

August 30th marks the beginning of the 10th year since my diagnosis. When trying to derive a clever or engaging way to share this idea, I think of the beach. I think of the waves. Sometimes the water comes in and sometimes the water pulls out. Sometimes the waves are gentle and sometimes they are violent. But that water and those waves are there day after day. And after 3,000 plus days of those waves, I’m tired.

I'm tired of waking up every day and not knowing whether it's going to be a good day or a bad day. I'm tired of being irritable or difficult with my wife and sons because I once again feel like shit. I'm tired of having to use the bathroom all the time because of issues with my bladder. I'm tired of being too embarrassed to say that out loud. I'm tired because of the invisible nature of this disease which leads to people not really recognizing just how sick I am. I'm tired because I want to live a long life but the one that I see in front of me presents more challenges that I know will already be there. I'm tired.

So I don't want to ride this year.

Except I have to.

I have to because I can't just quit. I have to because it's the right thing to do for me, my body and my brain. I have to because sometimes you just have to stop complaining and get on the damn bike. I have to because your generosity has helped me raise over $20,000 for over these past 6 years. I have to because if I don't, then the disease wins.

And I’m tired of that.

I will be riding in Bike MS NYC on Sunday October 19th. Any and all donations that can be made here are greatly appreciated as I fight the daily fight with the one million other Americans living with MS. Your support and the work of the National Multiple Sclerosis Society helps to make life better for us.

Thank you.

-Frank

What is Money Anyway?

As I passed the 20,000 step mark, pushing my exhausted legs towards the Epcot Monorail station, I sent a quick update on our trip to a friend of mine who had acted as my Mickey Mouse sherpa in helping me to plan our trip.

 

I’ve spent so much money on pins.

 

His response was simple and meaningful.

 

Haha. What is money anyway?

Had I purchased a borderline unreasonable amount of

Disney themed pins with marked up prices?

 

Of course I had.

 

Was my immediate acceptance of his message a defense

mechanism against the economic doom hanging

over me as more and more money was spent with each scan of my

Donald Duck themed wrist fob?

 

Perhaps.

 

Did it matter?

 

No.

 

Kate and I had avoided a Disney trip throughout our first 12 years

as parents. While a fair amount of that avoidance could stem from

either not wanting to travel with toddlers or even our oft times

contrarian attitudes, the biggest reason would be just how expensive

the whole thing can be.

 

But while I know that we might not have the money I also know that

we don’t have the time.

Where it be the last 12 years or 9 years or 6 months, life has taught me

that all things are fleeting (although credit card interest doesn’t always

feel that way) and that all we truly have is what is immediately in front

of us.

 

Our trip to Orlando confirmed this for me.

 

Visiting the parks, riding the rides, trading the pins and enjoying each

moment led to a wonderful and memorable week for our family. On

the second day of the trip, my 10 year old started to reach for my hand

more as we moved from throughout the day. Whether it was the size

of the crowds, the nerves of the upcoming thrill rides or just wanting

some security, I kept feeling his hand reach out for mine. While I

love my son, the full truth is that after the first few hours, it started

to become a little tiresome. Between the challenge of navigating through

crowded parks as one half of a three armed race or not wanting to clasp

a sweaty hand all day, it wasn’t always something I wanted to do.

However, doing things you don’t want to do is towards the top of the job

description for being a parent. After a while it just became part of day.

 

We carried on through the remainder of the trip and while eating Mickey

waffles at our final breakfast, the once Disney hesitant parents were

sharing lists of favorite rides and attractions and leading a discussion

about how and when we would be returning. In that moment, reliving the

trip brought me great joy and I genuinely cannot wait to go back.

 

Later, as the plane began to taxi towards the runway, I was blindsided

by a launch coaster of emotion. I don’t know if it's this

Modern Family clipthat has invaded my middle aged dad social media

algorithm over the past year but as I reflected on the immediate past

of one trip and the daydreamed future of another, I was smacked with

jarring thought.When we go back, there won’t be a sweaty hand for

me to hold anymore. Tears welled up in my eyes while sitting next

to a stranger on a budget airlines flight from Orlando to New Haven.

What the hell just happened? Was it the Mouse that did this to

me? Why didn't I keep that Jersey Mikes napkin from our airport

lunch? All questions relevant or otherwise, were just confirmation

of what I already knew: that we don’t have nearly as much time

as we think.

So yeah, what is money anyway?