To Be Rare

​Today is Rare Disease Day. February 29, 2020. Leap Day. It is a club I joined on September 11, 2016 when I was diagnosed with Transverse Myelitis, a  rare condition that impacted my spine. I am currently working on a book for children to help them inderstand why I have my canes and sometime a wheelchair. I want to be able to answer the normal questions of childhood in a comfortable way with love. It has taken on a life of its own and become a celebration of disability and difference. 

​​In the book, I try to explain to kids what it means to be rare. I struggled with how to illustrate that in a picture, until I thought of Leap Day! That is why today was chosen as Rare Disease Day. Though celebrated each year on the last day of February, its origins came out of the uncommon Leap Day.

​In the book, I try to explain to kids what it means to be rare. I struggled with how to illustrate that in a picture, until I thought of Leap Day! That is why today was chosen as Rare Disease Day. Though celebrated each year on the last day of February, its origins came out of the uncommon Leap Day.

What has been fun for me to see this year is all the special celebrations people have been having with their connections to this date. Anniversaries and birthdays are all enjoying this special rarity that makes a 100 year old person today celebrate only their 25th birthdate. There is joy in the connection, and a sense of pride and an awareness that they are indeed part something special.
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Watching all of this underscores the message of my book. We are rare, but we are special. The club of rarity is not a large one, so perhaps that is why those in it cling so tightly to one another. To share an unusual bond with someone is to just make it stronger. 

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​What is not rare, is the compassion and friendship that those with rare illnesses bring to the table. We become vulnerable the minute we disclose our condition to others who know about it, for they immediately know, at least in part, our struggles. Perhaps that is where the expression “misery loves company” comes from. It is not that we rejoice in the misery of others, but that knowing someone else understands our pain provides an instant connection.
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Even when you take a step back from rare disease to illness in general, there is still a bond. There is an appreciation that even though the symptoms may have little in common, we understand that life is fragile and unexpected. We have been forced to face what is important in life. Time, activities, and family all refocus. In the chaos, there is clarity.

To take it a step further, think about rare things, like gems, and coins. It is precisely the fact that they are rare that gives them their value. It makes them more desirable.  In truth, even though some of us belong to the rare group of various diseases, we are each unique and wonderful. Our fingerprints are a reminder that there is only one of each of us. That make every person rare, and in turn valuable. How wonderful it would be if everyone would celebrate the rarity in each other.

​In doing research and planning for my book, it has taken on a life of its own. It has grown to include people far and wide, sick and healthy, conditions hidden and seen. All faiths, loves, locations. All have embraced this project and me with love and support. That is the gift of rare. The diamond gem hidden within the lump of coal that only appears after tremendous pressure. Pressure is uncomfortable. Transformation is scary.

​But the real transformation created by my rare disease comes within my heart, not my body. I am wiser. I see things more clearly, even when my eyes blur. I am grateful. My body and life are not what I wished it to be. There are still moments of great pain and disappointment, and even some fear. But when I step away from those moments to see the bigger picture, I know that there is a greater good, filled with tremendous blessing that surrounds me when I take the time to look up and see it, and for that I am grateful.

So here’s to every Rare Disease Warrior. And everyone with an illness seen or unseen. And everyone with a beating heart. For we are all in this together. This leap year my wish for us all is that we can each begin to appreciate the things that make each and every one of us unique and special. Because when we can begin to do that, that’s when our world can lead with love and not fear or hate. ​