I'm a 'Seasoned Spoonie,' but I Still Have A Lot to Learn

I was born a Spoonie.

I haven’t known a symptom-free day in my 51 years of life. As I’ve gotten older, my diagnosis list has grown to the length of my arm, with an allergy list to match. I’m not unique; most of my friends these days are Spoonies, too, with lists nearly as long, if not longer.

I have meds that literally keep me alive. My nutrition comes from a can of manmade stuff called formula. It usually goes into a feeding tube, but I am able to drink it without any tubing right now. I have been hospitalized more than 90 times in the past 10 years. I have visited nearly every major hospital in the continental United States and met many of this country’s top doctors. I am limited in what I can do, and travel is usually not for fun but to get to doctor appointments or surgeries in other states.

My friends all live in my computer, as personal contact isn’t always possible, but they are still there, and they understand. I don’t feel so alone anymore. They have helped me find good doctors and treatments. They have helped save my life many times. When I am in the hospital, they keep me company and give me strength, hope and, many times, good advice.

My world is the Spoonie World and, while it isn’t easy or pleasant most times, I am comfortable in it, and I feel cared about among my Spoonie friends. I always say those living with chronic illnesses are some of the strongest, if not the strongest, people I know, and I’m honored to be among them.

Still, I yearn for a life free of meds, doctors, needles, hospitals, and even support groups, which I believe in with all my heart: I run two Facebook groups for those with chronic illnesses! But, as you will see, my diverse groups will attest to this need of mine to be free in my Spoonie World I call home.

My group, Spoonies Paradise, began over three years ago. In the group of over 1,300 members, we share the good things in our lives, the things we enjoy even in the face of illness. We share our hobbies, families, pets, vacations, hopes and dreams, and accomplishments. There, we can be “normal” yet among friends who still understand and don’t judge if we mention wheelchairs, feeding tubes and Netflix binge watching. I believe those with chronic illnesses need a break in their health journeys to be “normal.”

I have also come to realize Spoonies need to talk about our health issues, too. On my Facebook page, we don’t talk in detail about health. It’s a respite from the negatives. But the health talk continues to come up, in spite of everyone on the group saying they enjoyed a get-away. So, why the health talk even on a group called Paradise? After some deep-hearted thinking about my Spoonie World and its wonderful people, I’ve come to see that chronic illness is what we all have in common; it’s what we live and, many times, it’s made us who we are. It’s what draws us so strongly together and has made us family. In denying the health talk, I was basically denying Spoonies the right to fully be who we are. In my yearning to be free of my own health burdens, I wasn’t allowing Spoonies the freedom to be themselves. For this, I am sorry.

The realization truly hit me one evening when I was watching “America’s Got Talent.” A young cancer survivor told her story, then proceeded to beautifully perform Rachel Platten’s “Fight Song” that has become the theme song for Spoonies everywhere. That is my song, our song. It’s the song that tells me I am chronically ill, but I am strong, I can do this, I am not alone, and I belong. The next day, I created a group called Fabulous Spoonies, and invited the Paradisers (Spoonies Paradise members) to join, to talk about their health issues and get support.

I was born a Spoonie, but I sure had a lot to learn about being part of the Spoonie community. I still believe we Spoonies need a place get away to, so I keep Paradise a respite, but I now also believe we are who we are, and we need to talk about parts of our lives we struggle with, but that have made us, many times, who we are.

I am a Spoonie. I have a lot to learn, but I hope I’m now doing the right things by my Spoonie friends.

Image via Thinkstock.