A last road home.

I got up three times Thursday night to go to the bathroom. Not too bad. Used to be eight to twelve times before I had my colon removed. And even though surgery is not a cure for my Crohn’s, I at least had the chance to get up and go. Early Friday morning (using my phone as a flashlight to navigate the hallway to the bathroom as I never know what my son may have left on the floor ready to take out my toes) I read on a Facebook Crohn’s forum about a young mother of two who died due to her Crohn’s Disease.

 

I didn’t know her. Most likely neither did you. But we have seen her. Maybe it was at the grocery store pushing her two young children in a shopping cart. She buys the special peanut butter because her son doesn’t like that one brand. She looks tired because not only is she a mother of two small children she is also battling a chronic disease. Or maybe we saw her at the park. Maybe there was a dog, maybe there wasn’t. Maybe she was a cat person. And even though she hated doing it she just changed the litter box earlier this week. The cat flipping its long tail in a tiny nod of acknowledgment. Maybe she was at the oil change place waiting in line like the rest of us wondering if the guy is lying to her about really needing to replace the air filter. Or picking up a pizza at a late hour because somehow the afternoon got away from her and dinner was a thought that had never entered her mind.

 

Life is like that. Sometimes it’s a stretch of road we don’t like. Like when she came upon the detour sign:  <IBD Ahead >. And it beat the hell out of her. There was no GPS. No Triple-A. But she rolled with the punches. Wore her scars like the prizes they were. She didn’t choose the battle. Fate or her genes chose it for her. But she sure as hell got in there and fought. It’s what fighters like her do. And maybe at times while traveling down that desolate stretch of road she had to pull over to get her bearings, to rest her eyes, to refuel. She learned how to change flat tires. She learned how to keep rolling. And all the while she would smile at her babies there in the back seat with her. Always reassuring. People with chronic illnesses are tough like that.

 

If we followed her home and looked through her window we would see rooms and furniture just like ours. Pictures of her family on the mantle over the fireplace. Boots and coats piled-up near the back door. A stack of mail on her dinner table. A familiar pile of dishes in the sink that she would eventually tackle. Along with the laundry and the lawn. She packs lunches. Runs the vacuum cleaner. Smells that the garbage needs taken out. Wipes the snot off her kid’s noses. Somehow gets both of them baths. Makes sure they brush their teeth. All the while battling an incurable disease. All the while never complaining.

 

And at night when the exhaustion creeps in soaking her bones with a numbness only the chronically ill can understand she tucks her children into bed. Making sure her daughter has her teddy bear. The one wearing a t-shirt that has a red heart on it. Maybe she tousles her hair, pokes the nose of the bear and tells them both to sleep tight. Smiles a little. Knows that all the exhaustion she feels is just temporary. That there are better days ahead. She takes her medications. Medications for a disease she never asked for.

 

I wonder if anyone ever said to her: “You must be joking, because you don’t even look sick.” Or my favorite: “Must be nice to just stay at home all day on your couch.” Or: “Why don’t you change your diet? Wouldn’t that help?” Or: “Try believing in God more.”

 

Or how about we find a cure? Because she wasn’t joking. I don’t know all the details. But someone called 911. Was she joking when the call was placed? Was she faking it? Was she joking when they strapped her into the gurney? Was she joking as she was gasping for breath? While it rattled about in her mouth unsure of where to go, unable to do what it could so easily do before? Was she joking when the ambulance doors slammed shut and mysterious people bustled about working to save her life? Who did she last see when those doors closed? Her two children? The littlest clutching a favorite stuffed animal, a look of bewilderment on his face. And whose eyes did she look into when she took her last breath? Her significant other’s? A stranger’s? Was she crying? Sad, confused? Was she afraid?

 

I keep thinking about two small children in the middle of Indiana. Two small children who are grasping with the fact their mother is no longer living. Taken in her mid-thirties by a mostly invisible illness. Her Facebook profile picture is of her two children. In it someone is holding her daughter’s hand. You can’t tell who though. I like to think it was her hand. A hand that tousles her daughter’s hair one last time. That shuts the bedroom door. A hand that takes the car keys from the hallway. A hand that shows us how, with strength and assuredness, to drive down that dusty and bent road we will all someday travel. May her last detour be Heaven. May she rest in Peace.

 


7 Comments
  1. Jeannie Reply

    Beautifully written. Crohn’s is such a devastating disease. I really knew nothing about it until my 40 y/o son got it. I had heard of it and when the doctor told him he had Crohn’s, I thought–great he’ll give him a pill and he’ll be all fixed up. Little did I know the road that was ahead of him. He’s about two years into it and has severe Crohn’s. So far, no surgery but who knows? Remicade did nothing for him; he’s about to start on Humira on Tuesday. I pray for all of you who are battling Crohn’s. A research doctor told him that there will be a cure in his life time. I sure do hope that he is right about that. God Bless you and everybody else who is on this Crohn’s journey.and God Bless the family of this young mother who was taken much too soon.

    • Ryan Reply

      Thank you for your nice comments. I do hope your son finds his answer. Sounds eerily familiar to my own journey. Crohn’s and Colitis truly are debilitating diseases that need more research funding. I too hope we have a cure and soon.

  2. Michele Hunsaker Reply

    Beautiful tribute. Gave me goosebumps. We definitely need a cure for this invisible disease

    • Ryan Reply

      Thank you for commenting. I couldn’t agree with you more. Just learned of 3 other deaths in the past week all from IBD.

  3. Sarah Reply

    As I sit here at 2 AM waiting for my pain medication to kick in, I’m moved to tears. Not only from your story of a woman who could be any of us, but because of the empathy felt from both the reader and the writer. I’m a 22 year old college student who was diagnosed in 2008, but it hasn’t gotten easier to deal with. Every time I try to rise above the fact I’m chronically ill, it’s time for the next Remicade infusion or I’m in the ER for kidney stones. Whatever it may be, it just doesn’t end. And it’s hard for me because I don’t have many people to talk to. I have a few friends who’ve been recently diagnosed who ask me for advice, so I stay strong for them because I know they need someone who understands. But I don’t like to seem vulnerable, so it’s a one way street. I love to be there to help them through because I’m the veteran, but being physically ill, I don’t want to add a mental vulnerability to the mix. So I stay silent and supportive, never showing my own personal struggles. I get the “I’m sorry” from my family when I’m not feeling well, and I know it’s genuine. But the sympathy doesn’t equate to the empathy. The empathy that, as I lay in my bed in pain from my arthritis and kidney stone brought on from my Crohn’s, your post gave me. So thank you for writing this. A sincere thank you.

    • Ryan Reply

      Thank you for your kind words. Please stay strong. Do you have any IBD support groups near you? Sometimes they can help. There is also a Facebook group called IBD Journeys. It is a closed group so you have to ask to be added and it is completely private. Wonderful group of people on there who get what you are going through.

  4. Gina Wyatt Reply

    This is so real, I get scared of death all too often, my youngest child has some major anxiety issues because of my health! I pray for God to wrap her babies in his safe and loving arms! WE DESERVE A CURE!

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