Still Miles to Go

People are often unreasonable, illogical and self centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.
-Mother Theresa

Sometimes I can find no words for what’s going on in the world around me. For what’s happening to those I love. For the pain and hurt I see. My solution? I steal words.

Mother Theresa is one of my favorite sources. She finds the words that my heart wants to say but is too distraught, too lost to find.

When I am hurt or see a loved one in pain, my first instinct is to pull it all back, to retreat. I often describe myself as being as vulnerable as a sea cucumber. I’m sensitive and out in the open. My only defense is looking pathetic and harmless enough that no one would want to harm me. (I mean, seriously, have you ever seen a sea cucumber?) But that’s not the answer.

People will always seek to harm those who are visible, those who are strong and whose strength rises above all others. I can’t think of a single politician, world leader, philanthropist, or public figure who has not been maligned backwards and forwards. No matter what you do, someone will find fault. Mother Teresa, for instance, won the Nobel Peace Prize and is en route to canonization. She also has her fair share of critics. Google “Mother Teresa and criticism” if you don’t believe me.

In recent days, I’ve come to debate if I should leave the blogosphere. No, I haven’t been targeted that I know of. Yet. But the more of me that I put out, the more there is to criticize. The more vulnerable my soft, cushy flesh has become. Again, have you ever seen a sea cucumber?

The Ferocious Sea Cucumber (www.richard-seaman.com)

Yep, the formidable and menacing creature that is, I’m not sure it would hold up long against a chinchilla. But I remain open and honest and present here because I feel that writing does far more good than bad. First, it is a beautiful outlet for me. I feel happier and lighter when I can be open and express my true and honest worries. And I love being able to celebrate and revel in the happy days. It’s a record of the journey I’ve taken. A journey I’m proud to have taken.

Secondly, I don’t physically have the energy – literally – to write or call each and every friend, family member, and loved one I have. I would love to. I wish I could let you all know personally that I’m okay. Actually, better than okay. I’m happy, stable, and dance in the sunshine – and the massive amounts of snow! I’ve stumbled recently, yes, but I rise. I’m not dying any more than I was prior to the last few months. In fact, I’m dying less. Because of these interventions (GJ-Tube, my central line, TPN, 24-hour IV fluids, etc.), I’m thriving. My earlier labs consistently showed I was malnourished. I was starving to death very slowly due to lack of nutrition which was due to a paralyzed GI tract (despite all previous medical interventions) which was due to Mitochondrial Disease. My labs still suck, but they are so much better!

Finally, the positive responses I’ve gotten from what I’ve written make it all worth it. I’m not here to sugar coat things. I’m not here to only share the worst of days. I’m sharing my raw responses to my life. Sometimes it’s just as normal as apple pie. Sometimes it’s more like mud pie. But if writing helps one person feel less alone, I’m happy. Of course, it doesn’t hurt that I’m also raising some awareness about a disease that is not quite rare, but certainly rarely known. Although I do write primarily for myself, it’s encouraging to know that someone out there is touched by it. That my footprint is still there. That my life meant something to someone.

So I’m not going to change. I’m going to keep on doing what I know. I’ll be kind and honest and open and happy and not care what anyone says. I’m not going anywhere. No matter what is said. No matter what is done. I’m not leaving.

Because I’d go to Wonderland and back for you, too.