18 Year Anniversary: A Whole New Life

All Photos: Taken October 2015 in Our Yard for 40th Birthday by Neighbor/Professional Photographer

Here I am, marking my 18th anniversary of getting sick. 18 years on June 18th.

How do I even begin to share all that has transpired over the past year since my last anniversary? 

On every level, life has changed dramatically in the past two years.  I'm so immersed in my new life that I have not taken the time to write as the journey has unfolded.

As I prepped to write a post tonight on 18 years since I first became sick, I re-read posts from years past. 

That was hard. Really hard. 

Just three years ago, I was trying to accept that illness--serious, chronic, life-altering, life-limiting, and painful--would be my norm forever. I was trying to accept that I had reached my highest possible level of functioning. I was trying to accept that every day of my life would involve physical and often emotional suffering.

I wrote:

I am to the point now where I have been sick for so long that I no longer remember the feeling of being healthy or alive in my body. This loss of my ability to summon an image of myself dancing or running or reading or easily engaging in an activity is a strange feeling. It's a large part of what has lead me to a journey of embracing my life as is, living my life with joy as is, accepting my life as it is now, and carving out a life filled with the things I can still enjoy--no matter how simple those joys are.

Wow.

My heart breaks a little reading that tonight. 

My posts from anniversaries past are dominated by the theme of balancing grief with gratitude, and while I often tried to keep gratitude at the surface, some years grief won out. 

In 2015, when I wrote the above paragraph, I made a Herculean effort to get dressed up, put on make-up, get my hair cut and engage in some activity that brought me joy. I mentioned how difficult I found feeling and finding a sense of femininity within the constraints of chronic illness.

With Tovah Rose

By my 16th anniversary, I was able to say that healing had begun. By 17 it was in full swing.

By 18, it's unbelievable. 

I can say that changes are happening monthly, weekly and sometimes daily. 

I so often remark on what I've been able to do in a day. I'm in awe. 

Getting dressed in cute clothes, doing my hair, putting on jewelry and make-up are now just part of my day. So is getting a haircut. They are no longer the 'main event' or something that cannot even be done.

With Gershwin

This year, on my anniversary of being sick, I think what strikes me most powerfully is the overwhelming sense of gratitude that far surpasses the grief in my life. 

I am also struck daily by the ABSENCE of suffering in place of what had become an almost constant level of suffering. Suffering is no longer a daily constant, but rather an intermittent occurrence. I can engage fully in activities without being overwhelmed by feeling unwell.

With Tovah Rose

Am I still sick? Oh, yes. Indeed. 

My life is still rigid and structured around what I need to do to maintain my health, to improve my health, and to keep symptoms under control. This includes strict medication regimens, PT, massage, acupuncture, dietary restrictions, naps, extra rest and sleep and exercise. 

I'm still limited in what I can do, most strongly by fatigue, the length of time I can stand or walk and difficulty concentrating.

Do my limitations still make me sad? Yes. 

Do I still grieve? Yes. 

Am I scared that maybe this period of increased wellness won't last? Absolutely.

I have spent the past year saying Yes! Yes! Yes! to doing, doing, doing, when sometimes I need to be saying Yes! to simply being. Saying No! to doing doesn't mean I'm not saying Yes! to life--it means I'm honoring the complete experience of life.

But that's very, very difficult after 18 years of having to say no, simply because no other option existed.

The way I'm living my life right now--busy, busy, busy--isn't exactly sustainable. But it's also what I believe to be a natural reaction to feeling that the world has opened up to me again.

Finding any sort of balance when the everyday norm I experience is changing so quickly has proven extraordinarily difficult for me.

With Gershwin

I will never get back those 18 years that I spent mostly homebound, and sometimes bed bound; those years during which I grieved so deeply it physically hurt as I watched my friends marry, have children, start careers, buy houses, go to grad school, travel and grow into the adults they are today; those years when I felt like an observer, like an outsider looking in at a world that was not mine; those years that strained my parents hearts so deeply; those years when suffering was the norm almost every minute of the day.

Today, I try my hardest to live in a place of hope that I will not, for some reason, go back to that life again. I know this illness and its cruel twists and turns--I watch it in myself and I watch it in those I love who also have it.

When I almost breeze through a day now, I wonder how I managed year after year suffering the way I did. How did I survive that? It's terrifying to think of going back to that state of being, and how it felt to be that sick is still fresh enough in my mind and muscle memory that I can easily be paralyzed by the awfulness of it all.

As cliche as it is, there are no guarantees for any of us, chronic illness or not, so I work to embrace this incredible gift I have been given to live a life in which I can feel alive in my own body. My path to wellness seems as mysterious as my path to illness. I am, quite simply, very lucky.

On this anniversary, I celebrate life. I say, "L'Chaim" (To Life in Hebrew). I marvel at the symbolism that the number 18 (and multiples of it) is used to represent life/Chai in Jewish tradition, while I mark 18 years on the 18th. 

Playing in the Sand at Sunset Beach 2016

I thank G-d that somehow I've come out of this past 18 years able to embrace life and joy easily, readily and quickly. When it comes to my illness, most days are filled with gratitude, joy, and happiness rather than the pain of grief. My spirit still wants to dance.

I thank G-d that I remain surrounded by friends who have journeyed with me and parents who have never given up on me, because that wasn't an easy task for any of you to do for so many years.

Blessings,

Emily