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
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