Are You Going To Die? (Published to Plymouth Patch March 2, 2011)

The truth is always better than what can be imagined in its place

My then 13-year-old son, Dylan, asked me that question. It was March 15, 2009 and we were gathered in my room at Jordan Hospital. Me sitting up in bed – connected to various tubes and wires, the kids sat at the end of the bed, expectantly. Pat paced behind them. By this point, I had been in the hospital four days and we had been limiting the information that we gave the kids until we knew more.

I was really sick, I told them. What we thought was pneumonia wasn’t. I have an illness that affects my heart. It’s something many people have. Grammy (my mom) has it. It is something the doctors understand, and medications and treatments exist to help manage it.

I had congestive heart failure stemming from a viral infection in my heart. I know! Who knew that could happen! 

Nothing really prepares you for caring for a child when you are sick. When your future is uncertain. I had thought about what would happen to my family if I weren’t around. Or how I would parent if something happened to Pat. But never about what would happen if I were disabled or debilitated. The prospect of parenting through a major health crisis or problem had never crossed my mind. I learned. The hard way, the way I am destined to learn everything.

“I have no intention of dying." I told them. "I need to have some more tests done and learn as much as I can. It’s going to be hard but we’ll face this together. No matter what happens we’ll deal with it.”

They were still young, but at 13 and 10, old enough to catch on that something significant was going on.

When I got home – no matter how scared, tired, or upset – I got out of bed. Every day I was there when they left for school and again most afternoons. They needed me. Maybe more than ever. With so much uncertainty surrounding my health, I was determined that this would not define us. If this was to be our life, then it was going to bend to my rules.

We planned menus and took walks. We learned new ways of cooking. We learned how to shop. We read labels and calculated percentages. The kids pitched in around the house. Carrying laundry. Learning how to vacuum. Stacking the dishwasher. We created an air of normalcy as we met this challenge together – as a family.

There was no future, no planning. There was just the now. Managing day to day. I would tell myself, after the next appointment we’ll have answers. A plan. Something. Anything.

I’m sure you’ve surmised that I’m not dead. Two years later. I’m better. A medical miracle by one doctor’s assessment.

Being sick taught me so much. I learned I’m stronger than I ever imagined; that Pat is the most amazing man in the universe; that my kids – my incredible kids – can rise to any challenge. What could have devastated us made us stronger. We survived. We persevered. We thrived. We did it with honesty, stubbornness and a whole lot of laughter.

Trust your children with the truth. They get it. Let them impress you. Mine did.

Chronic Understanding - (Published to Plymouth Patch July 27, 2011)

Life is short but there is always time for courtesy. ~ Ralph Waldo Emerson

I got amazing news recently, I have been “reversed”. That means that the Congestive Heart Failure (CHF) that I was diagnosed with over two years ago has been reversed. As in, I’m as close to cured as it gets for this disease. I’m a miracle. But ya’ll already know that, right?

One of the many things that I learned during my walk on the chronic illness side of life, patience. Chronic illness is funny. You can’t always tell that someone has a chronic illness just by looking at them. If you had seen me at my sickest, you’d probably just think I was a little slow-witted and out of shape. You’d never know that I was a second away from a heart transplant. I was able to work and I was able to take my kids to activities but I paid for it in private. Weekends spent in bed or on the couch because I pushed myself too hard. Excess swelling and nights of vomiting when the fluid built up too fast. Getting dizzy and light-headed when my blood pressure would plummet. Fun times. No really, fun fun fun.

We walk among you but you don’t see us. Not really. You get annoyed because we walk slow in the heat and humidity. We stop, a lot, sometimes suddenly and you’re forced around us. We ask you to repeat things since some of us have tricky memories due to medication and low blood pressure and circulation.

I joined a Facebook page dedicated to living with CHF and I have met so many amazing people. Most have it a lot tougher than I ever did. They inspire me. The determination they have to not let illness define them, the courage they wield as they face life with as much vigor as can be mustered, they carve out lives that have meaning and consequence. We laugh at ourselves and each other. There is no question off limits. Seriously, everything from where in the world we live, to how much sex we have, and how soon we started having it post diagnoses. It’s a remarkable community and I feel like I have friends for life.

It’s not all sunshine and ponies there. It’s also a place to yell and vent. To scream “why me.” What you find in return is understanding and honesty, solace without pity. Big, wide, shoulders to cry on and a hell of a pep talk.

It’s not just cardiac patients that hide in plain sight.

Arthritis, Crohn’s Disease, Depression, Diabetes, Fibromyalga, Lupus, Multiple Sclerosis, and so many more.

All of them debilitating and all almost completely hidden. Chronic illness inhabits your whole life. It will take over, if you let it. Each, of course, comes with it’s own problems and peculiarities but it all boils down to the same. Something’s wrong. Your reactions are different. Your mental processes are different. Your emotional reactions are different. You are different. You may fight that difference but the illness will not be ignored.

Do me a favor, next time you feel your impatience rising because of the slow poke in front of you; or you’re on the phone with the guy who can’t seem to decide what he needs; or the woman at work who doesn’t remember what she told you, I want you to stop.

Then I want you to reach out.

With a smile.

With patience.

With understanding.

Read more of my journey here