22 to 34: Gone. Forever.

Thoughts of grief, loss, sadness, suffering, gratitude, hope, and God occupy much of my thoughts these days. While I've longed to write about it, making sense of it all and verbalizing it seems overwhelming. I'd like to give it a start today.

I'm not sure why this moment happened last Fall or exactly when it happened. But I glanced in the mirror at my pale face, noticed the crow's feet around my eyes (how had I never noticed these before?) and in some strange way--physically and emotionally--I felt a little death inside me. I 'suddenly' turned 34 and deeply felt the loss of time.

How do I even explain what happened at that moment and the little deaths that have continued since then?

I became sick one month after college graduation. I was 22. And somehow until that moment I looked in the mirror last Fall I felt frozen at 22. That was when my life as I knew it had stopped. All I could ever imagine was if I got healthy, I would simply return to being 22 again.

That doesn't make a lot of sense, I know. But age 22 is my only reference point as to what it is like to function as a healthy person in the world. So each year that has passed since then, I've continued to assure myself that I "have time" to still do all the things I wanted to do in life. And I envisioned myself returning to that same thin, blonde, energetic, body. Suddenly I was grieving the 22 year old and each age I had never experienced in a 'normal' way.

Perhaps it is the fact that 35 is looming on the horizon and I'm still so far away from that body I want. Or it's just that 12 years is a long, long time to wait. And there is no going back.

The beginning of 2010 was certainly a turning point for me also. The news stories looked back on all of the things that happened in the last decade. We, as individuals, were asked to look at all of the things that had happened in the last decade. I looked and what I saw was a life that felt as if it had been standing still while others moved forward. The 20's and 30's are busy years for most people. This is part of what makes becoming chronically ill at a young age so complicated. How many address changes had my friends had? How many jobs? How many houses? How many children? How many cool experiences? All I saw was illness.

It was not until yesterday, during my appointment with Maxine, that what I've been feeling became verbalized.

As we both cried, Maxine said: Emily, this is a huge loss. Those years are gone. Forever. You can never get them back.

She continued to say that even if I am perfectly healthy at age 40 and able to have a child, get married, work, etc. I still missed these years.

I still missed my youth.

It's gone. Forever.

Yes, I've chosen to use these twelve years to grow, to use my suffering to hopefully help others, but that is a huge price to pay in exchange for our hopes and dreams.

I put a great deal of pressure on myself to remain hopeful--to see that I might have a child later, that I might have certain experiences later in life. And they might be phenomenal. I also put a lot of pressure on myself to focus on gratitude. In the past, I have discussed finding the balance between grief and gratitude.

I immediately try to replace my grief with gratitude. Or minimize it. Yes, I have a lot to be grateful for. And yes, all those things I had hoped for could have turned out miserably. And yes, my situation could be a heck of a lot worse. I can rationalize, re-frame and think of all the ways things could have turned out worse. But none of that eases my grief.

I'm still just very sad about what is already gone.

I wanted to go through normal life transitions with my friends.

I often ask myself and God the following question: Why was I meant to be an observer? And not a participant in all of these experiences? Why wasn't I part of having them with my friends?

How does one tally all of the experiences of our 20's and 30's that we won't ever have the opportunity to experience again? They are small and big. They are physical, emotional and spiritual. They are shallow and deep.

Missing every friend's wedding, baby shower, wedding shower, birthday party. Going for girl weekends to run half-marathons. Never meeting my friends' children. Not seeing my grandmother for the last ten years of her life. Not seeing my Iowa family for more than 12 years. Watching my body physically change and knowing it will never move or look like it did before. And never having been able to enjoy that young body. Experiencing first hand dating, relationships, marriage, graduate school, buying a house, having or adopting a child. Going to the movies, out to dinner, to concerts, out for a drink. Traveling. Going for a bike ride. Watching my hair change from blonde to brown. Spending time with friends and family, untethered by the constraints of my illness.

I don't even know how to list what I've missed, because there is no way to. How do you make grief and loss into a list? Almost every action that a healthy person does daily is something I haven't experienced. What I miss the most is the gift of time to be with those I love and being with them through all of their life transitions. Second most, I miss being a in a body that feels alive, one that takes me places, goes places, and dances.

I just know that the grief hits me on a gut level. The other night we met two of our new neighbors: two young couples with careers, fit energetic bodies, and one of them with a cute new pooch. All I could feel was left out. Earlier that week we met our 5 year old neighbor girl. She's five, lives right down the street, and I've only met her once? She's a child that lights up the world. Not only was I sad not to be able to spend more time with her, that I had never been well enough to spend time with her and know her over the past five years, but I was sad that she wasn't mine!

It hurts so much. I have sobbed, screamed and cried out to God: Will this ever not hurt so much? Will I ever feel joy again?

I've been trying to process my grief with others and in so many different ways. I've gradually been giving myself permission to feel grief, and to accept the validation from others that I do, indeed, have a lot to be sad about (as Dr. Lyme said.) But yesterday, in those moments with Maxine, I finally felt something within me shift. It was almost a relief to hear her say: Those years are gone. Forever. And at a huge price.

It let me realize how important it is to grieve this loss. How real this loss is. Hope and gratitude have a place, but so does grief. One does not replace or take away the other.

Blessings,

Emily

Photo: Ladybug on Burning Bush in our yard. Bush was planted to mark my ten year anniversary of getting sick.