How to Touch a Life

ALL
Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love?
How about love?
How about love? Measure in love

Seasons of love. Seasons of love

JOANNE
Five hundred twenty-five thousand
Six hundred minutes!
Five hundred twenty-five thousand
Journeys to plan.

Five hundred twenty-five thousand
Six hundred minutes
How do you measure the life
Of a woman or a man?

COLLINS
In truths that she learned,
Or in times that he cried.
In bridges he burned,
Or the way that she died.

ALL
It's time now to sing out,
Tho' the story never ends
Let's celebrate
Remember a year in the life of friends
Remember the love!
Remember the love!
Seasons of love!

JOANNE(while ALL sing)
Oh you got to got to 
Remember the love! 
You know that love is a gift from up above 
Share love, give love spread love 
Measure measure your life in love.

--Seasons of Love from the musical, Rent--

Much of my time away from blogging has been because we have a puppy, but it has also been in large part because I have been doing such a large amount of processing and transformation that I have little energy left to write. I'm more ready to watch some fluffy TV and snuggle with the pooches at the end of each day, than try to put my thoughts together for a blog post.  I've missed the routine of blogging, yet while I was away, I realized that taking a step away from blogging was, unintentionally, exactly what I needed to do.

As we begin year 5773 in the Jewish calendar and a get ready to celebrate my birthday, I find myself in a new place of contentment and peace--with a new understanding of the meaning of my life and of what matters most to me in this world. I have, as the lyrics above ask, a better understanding of how I want to measure my life. 

Over Labor Day weekend we had several neighbors over for a picnic--something I haven't been able to do since I got sick 14 years ago. As we were planning the picnic and inviting neighbors, I discovered that all of the neighbors were very enthusiastic about it and couldn't wait to come. And I realized the neighbors were not coming because we had a fancy house, because I had cute children, because I had a successful husband, or because I had a some sort of successful career. They were coming simply because they enjoyed the company of myself and Mom. Period. It didn't matter to them that I was sick or disabled. Everyone brought amazing foods and the picnic was a wonderful, joyful success.

Shortly after the picnic, I posted one day on a small social networking site to which I belong that sometimes the thought of being this sick the rest of my life completely overwhelms me. (One more reason to stay in the present). A dear college friend's husband posted a link to one of his blog posts in which he talks about how I live my life and how it inspires him. I was so moved that Emily's husband, whom I have actually never met, so accurately depicted my illness and circumstances and that somehow, without having even ever met him, I had touched his life too. He depicted my situation better than many people who have known me for a very long time are able to--which is not only a testament to his attention to detail, but to his relationship with Emily and how he tunes into her. 

Around the same time, I received another email from a friend that I met online, have now met in person, and text with a lot. She described the ways in which my decision to get a wheelchair and then to encourage her to do the same had changed her life. She also shared how my openness and authenticity about my illness and my experience encouraged her to share her own reality for the first time in her life. She had watched me share my life authentically and had seen the friends and family who had so wonderfully rallied around me in support.

Over the years I have received many, many, many life-affirming and beautiful emails, cards, letters and phone calls about how my life matters. So, why did things suddenly 'click' now? I'm not sure. Because up until now my friends and family, especially Jeannine and my mom, have likely felt as if they are beating their heads against a brick wall.

One evening after the picnic and these most recent affirmations of my life, I was hanging out in the recliner cuddling with Tovah Rose and feeling crummy. I said to Mom: "You know, all I wanted to do my whole life was touch other people's lives. All I wanted to do was make other people's lives better. I thought the only way to do this was to go into a helping profession--such as being a doctor or nurse--and to have children. Maybe the lesson I am to learn is that if this is the life I have been given, I have the ability to touch more lives than I might ever have had I not gotten sick. It's just a very different way of doing so."

Over the summer, I listened to John Green's latest Young Adult book, The Fault In Our Stars. In the book the two main characters, who are both teenagers dying from cancer and falling in love with one another, have a fundamental struggle over the meaning of life. The young boy wants to 'leave something behind'. By leave something behind he means something that he sees as big and important. The young girl essentially says to him: "Don't you see, Augustus, this is all we get. This IS what we leave behind. This IS enough." She was referring to their families, to the love they felt for each other, for the every day joys and pains they experienced.

When I began reading the book, I was much like Augustus--obsessed with leaving something behind--such as a blog read by lots and lots of people. By the end of the book, I had already started to become much more in line with Hazel. This is enough. Our friends, our parents, the love we give and receive. Sometimes it all just looks a lot different than we thought it would.

Being sick absolutely sucks much of the time. I'm not going to gloss over that part of things. I hate that so much of my time is spent resting, sleeping or otherwise engaging in quiet activities that are more about surviving the pain and discomfort than in any way touching lives or enjoying what this wonderful world has to offer. Did I make sure and say hate? I also often feel frustrated by the amount of time and energy that goes into simply maintaining some sort of quality of life. Even though I LOVE my massages and I'm incredibly grateful for them, I sometimes feel frustrated by the constant demands that illness places on me.  I spend at least 17 hours a day in bed sleeping or resting, many hours each week dealing with medical care--whether it is appointments, counseling, massages, fighting with my insurance for prescriptions, or other such things--and many hours just doing the maintenance of the day to get through physically in terms of warm baths, meals, snacks, and medications. This leaves frustratingly little time for anything else. 

What I didn't realize though, until just recently, is that simply by being my authentic, honest self, who lives my life as well as I know how with this illness, I have the ability to touch people's lives and live a life that matters. What I didn't understand deep in my core, until now, is that I do not need to do any more than what I am already doing to be loved, to live a meaningful life, and to touch others in a way that makes the world a better place.  What I didn't understand until now is that living my life as well as I can is ENOUGH. 

As Mister Rogers said: "I've always been myself. I just figured that the best thing you can offer anybody is your honest self." And that is exactly what I will continue to do, while now realizing that offering my honest and authentic self is my gift.

This past year, as I've delved deep into the process of transformation I've, in some ways, become more selfish. Yet I'm happier and more joyful than I've been in many, many years. This is all a still a bit confusing to me, but Mister Rogers wanted us to love ourselves--because ultimately, if we live by the Biblical idea that we should love our neighbors as ourselves, we must learn how to love ourselves first. Then we can really love our neighbors.

Now, when I blog it will be an enhancement to my life, but the meaning of my life won't depend upon it as it did before. This is very freeing.

It matters to me that what I leave behind is a trail of love and kindness: that my friends know I was always there for them to the best of my ability in the midst of illness, that I gave Asher a home that pleases his foster mom, that I gave Tovah Rose a home that pleases her breeder, that my Mom always knew she was appreciated and loved, that when I greeted you I did so with a smile. These are things that I can be, every day, even in the midst of illness. I don't need to 'do' anything. I am enough just as I am. We are, after all, human beings, not human doings. 

I'm also learning to appreciate more that seemingly small things can have a huge impact.  I've always known the power of 'small' gestures especially because I am often on the receiving end of them. But I'm now better learning to stop minimizing them as 'not enough' when I do them myself. One of the things I loved and miss the most about my Iowa Grandma was her faithfulness in sending snail mail. She always wrote a note and tucked a brand new one dollar bill into the card. I still miss receiving those cards. Sometimes a book recommendation, a card in the mail, an encouraging text, the pharmacist that takes extra time to help me, the nurses that don't grumble at my needs, and so many other daily occurrences are gifts of time that can carry me through the difficult day I'm having.

My prayer for this year is that I can continue to hold onto this new feeling of peace, contentment, meaning, and purpose in my life. That I will continue to grow in my understanding that I am enough, just as I am. That I will continue to accept that I may not be a part of the world in the ways I had hoped or imagined, but that is okay. Long before I got sick, and all throughout my illness, I have always valued deeply love, kindness, gratitude, compassion, empathy, integrity, honesty and authenticity. It's just that now, I see how living a life with these values is fully living a life with meaning. That is what I want to hold on to.

Thank you to all of you, who over the years, have affirmed the value of my life OVER and OVER and OVER, patiently loving me and waiting for me to finally understand that you really did mean what you were saying, that you really did love me as I am. Sometimes we blondes can be a little slow. :)

Blessings,

Emily

Note: I highly recommend the new documentary recently aired on PBS entitled Mister Rogers and Me.