Editor’s Note: What makes a person a real hero is when they are the hero yet they sing the praises of others. Frank Orlowski is that kind of hero. I honestly could not get the Quechee, Lebanon and Norwich Times out to each community without his help. Not only does he persevere with kindness and patience while selling advertising space to our local businesses, he pitches in and writes many of the articles (often with little notice). And, when the paper is delivered to my office, Frank arrives in his pickup and slowly but surely loads the boxes of extras onto the truck to deliver them around town. Frank soars with a different kind of cape, and for that I am deeply grateful.

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I wrote this post for my friends on an ataxia site, as they deal with the same condition I do. However, I think the message is universal, so I wish to share it with you here. We all know of others who deal heroically with tragedy or great challenges, and I know many of you fall under the definition of hero. Let’s remember all those regular people faced with extraordinary circumstances, that fall into that hero category, through their actions and efforts. They inspire all of us.            ~ Frank Orlowski

Not All Heroes Wear Capes

Any of you wear something occasionally to honor someone else? Every once in awhile, I wear my father’s tooled leather belt, though he died some 30 years ago. Well, a few days back, I gave blood, and they gave me a shirt as a gift for doing so. When I opened it and saw the message, “Not All Heroes Wear Capes,” I did not think about blood donors. Giving blood is a good thing to do, but not heroic. What I immediately thought of was all of you, dealing with ataxia, either as a sufferer, or a caregiver.

Heroes are merely ordinary people put in extraordinary, difficult situations, who find some way to deal with, if not overcome those circumstances. Heroes do not always triumph, but they do strive to make the best of a bad situation. And heroes do their best to uplift those around them.

An act of heroism can be as simple as getting out of bed, getting dressed, and facing the day. It can be deciding to take part in an activity, despite the fact that others may look at you strangely because you cannot walk, talk, or move right. It can be as simple as saying “I’m going to live, and work, and play as best I can, in spite of my condition.” And it can be smiling and laughing, as your heart breaks, because you are taking care of someone you love, who has lost the ability to do so much.

These definitions of heroism apply to all of you. So whenever I wear this shirt, know it’s in honor of heroes such as yourself.

Growing to Appreciate

I always loved swimming in huge bodies of water; Lakes Michigan or Huron, the Atlantic, or the Gulf here in FL. Would run down the beach into the water, dive, and swim out as far as I wanted. I never thought twice about it, and took it for granted. Now, it’s slowly maneuvering my rolling walker through the sand, carefully parking it, getting down on my knees, crawling on all fours to the water, and sitting where the waves lap up over my legs to my waist. As much fun as before? Maybe not, but surprisingly more satisfying. The effort it takes now is rewarded by the therapeutic value to mind, soul, and body of once again feeling the comfort of the water and waves covering part of my body. The moral of this? Never take for granted the pleasure resulting from things you love to do, and more importantly, never allow circumstances to deny you the joy of still doing those things, in one manner or another. Adapt, be strong, have faith, and live.

A Few Good Messages

Frank Orlowski savoring moments on a Florida beach

Today is a day set aside for those that live with rare disorders and conditions. (I almost wrote “suffer from” in that sentence, but I honestly do not think I suffer; more correctly, I live with). Though each disorder is rare, when you put them all together, there are a large number of people dealing with rare medical conditions. Some have answers and treatments; others – such as the ataxia I have – have no remedies. I will share this piece I did on ataxia a while back, to let you know about this particular disorder.

If you are not familiar with ataxia, you are not alone; I wasn’t either until a couple years back. It is a rare neurological condition that affects one’s mobility and balance. Like many other neurological problems, not much is known about it, and there are no cures or effective treatments, though exercise and movement helps. It affects people of all ages; my issues started in my mid 50s. I’ve gone from a slight limp and change in my gait, to needing a rolling walker to get around. It also affects other physical attributes, such as hand dexterity, eyesight, swallowing, and causes tightness, or spasticity. Falling down is a common problem. However, much as coach Jim Valvano said in his famous ESPN speech about his cancer 25 years ago (watch it on you tube if you’ve never seen it – inspiring), it cannot touch my mind, my heart, or my soul; and after all, those parts are what really matter. So if you encounter someone with ataxia, there are a few good messages to give them: “I’ve heard about ataxia – it sucks,” or “You’ve got a lot of guts fighting that,” or even “I’d like to give you a hug,” (of course, always ask first before giving the hug!). Anyhow, thanks for listening, and above all, please don’t feel bad for me; we all deal with burdens in life, and often those burdens lead to great understandings, and traits, such as strength, perseverance, adaptability, and courage, we never knew we had. For more about ataxia, check out Ataxia.org.