Gift of understanding

I fell to the floor, hysterical. In hindsight, it feels like an overreaction. You don’t really know how you are going to react, though, when you hear something so life changing. Cancer. Lymphoma. Stage Four. Fifty percent survival… at best.

My dad was on the other end of the phone. He had just spoken with the doctor who found the grapefruit-sized tumor in his abdomen and immediately called to tell us he’d be in surgery the following Monday.

My dad lived in Boise, a 2,000 mile plane ride with a layover in O’Hare between us. I was used to spending my summers there; I had been doing it since I was two. The summer after my freshman year of college was supposed to be one of the first where I stayed in one place, got to do what I had planned and wanted to. Instead, I would be on another plane, traveling across country again, hoping that this time wouldn’t be the last.

I’m kind of a take-charge, no bullshit, Type AAA person. Even though I was eighteen, I fell right into line, stepping in to coordinate my single dad’s treatment and care for the summer.

It was exhausting. My dad and I had a somewhat strained relationship as it was. Chemo and steroids and mortality looming did little to improve the underlying issues created when I was much, much younger.

The one thing I did have was hope. And humor. I researched my dad’s cancer to the point that doctors asked about my medical background. I questioned my dad’s oncologist when she seemed overly concerned about his lack of response to the treatment… I had read it could take several months (and as it turned out, I was right). When my dad’s hair started appearing around the house and I told him it was time to shave it, I bought hot pink and neon green hairspray and turned my OCD, attorney father into a punk. It might be one of the greatest memories he and I share.

There were many days still where I felt very alone. It is hard to understand the realities of being a caregiver until you are sitting in a hospital chair with a sleeping family member trying to figure out when you can go grocery shopping between chemo sessions, blood draws, and appointments with specialists.

On my birthday, one of the greatest moments of my 30 acts of kindness was taking flowers to the oncology floor and asking them to give them to someone having a particularly rough day. Today, I will take flowers not only for a patient but also a caregiver. Those are lonely days filled with fear. It is very easy to believe that no one understands. I hope that today there is at least one person who knows that someone does. And that they care.

Words that heal

In 2008, I stopped smiling.

My house had burned down ten weeks prior, my son born six weeks before, and then my face stopped working (yeah, it was really awesome being me that year). The entire right side of my face was paralyzed, a reflection, quite honestly, of how I was feeling emotionally. Within weeks, I was sick, really, really, really sick. I thought I was dying. Everyone else just thought I was depressed. It took a year, and quite a lot of doctor and ER visits, before a neurologist finally tested me for Lyme. And even with a positive test and symptoms that fit the disease to a T, I still had doctors call my labs “false positives.”

It took another year to regain health to 80% of where I was. I have had a rare few months where my health has been a bit better. My doctor doesn’t accept insurance. His office is an hour plane ride away. I had a PICC line, home health. Until the Affordable Care Act was passed, the likelihood of ever being insured under anything other than a catastrophic plan was slim. I am lucky that I have the resources to be able to pay for medical care, even though it ate through a lot of my savings. I know the realities of this disease and the financial toll it can take.

This year, even though I’ve been battling my own relapse and long-term nerve damage, I am giving to others who are not so fortunate, others who are fighting this disease and who are struggling as a result. I have four kids for whom I am sending shoeboxes full of small gifts: an 8 year old boy, a 10 year old boy, a 13 year old girl, and a 16 year old girl.

As I was buying the items for the shoebox today, I was thinking about chronic illness in general. One of the kindest things you can do for someone who is sick is simply ask “How¬†are you feeling today?” For those of us who have been sick for a long time, we know that it is exhausting to discuss health problems over and over (it’s exhausting to us too). We know that it seems like we are always sick (we are). But those words are so much more than a question. They are an acknowledgement, an acknowledgement of the struggle, of the journey, of the successes we have every day. Because Lyme in particular is so controversial, it can also be an acknowledgement that we truly are sick and not just crazy. Another great question? What can I do to help? A home cooked meal can truly be such an amazing gift when you are sick and working to just get out of bed each day. Coffee with a friend can return normalcy into a life that has been turned on its head. Stopping at the store to pick up some groceries may not be a big deal to you, but for someone whose head spins from the noise and the lights, it can be a true life saver.

It isn’t always easy to listen to others talk about their health. But those words can heal. Your words have power; use them kindly!