Friday, May 17, 2013


Yesterday was my birthday.  I spent it in Phoenix mostly by myself, which as other CFS'ers will appreciate was perfect.  It was only so nice because I was not "alone".  It took the pressure off to attend a party that would tire me out.  Instead I had the joy of just being, and taking in lots of love.  I was on the phone a lot.  I got pretty flowers from my doctor on Wednesday and I was so surprised by the gesture.  I had been a million miles away when she came through the waiting room door holding this beautiful bouquet.  Even more precious was the fact that her office manager had called my parents  house to see what kind of flowers are my favorite.

Flowers from Dr. D and Assistant

Kristine who helps me every day also arrived with a vase full of blooms.  All those that "help" me while I am here went above and beyond with kind words and gestures.  I "Facetimed" (apple skyppe) with my sister in the morning and my niece and nephew virtually opened my presents for me since they were very fragile handprints that are staying in Wisconsin until next week when I get back.  Then my favorite part of the day I went to the mail box and opened a handful of cards while eating lunch at my kitchen table.  This was pure joy, I wasn't in bed eating.  I was sitting at a kitchen table, slowly savoring each card while having a ham sandwich.  It all felt so NORMAL...and it was bliss.

Flowers from Kristine and Lad (her husband)

I talked on the phone too much, and got a ton of texts.  Fedex arrived at 6pm and my parents present arrived that my mom was getting very disappointed that 2 day air hadn't worked...but it did.  My friend came over and joined me and we watched the Season Finale of Grey's Anatomy, a show that we started watching many moons ago when we started medical school and though not as good anymore, it had that aura of familiarity that I have grown so much to appreciate for it's structure.

There were moments of sadness and reflection like most birthdays as I now entered the 4th decade rather than celebrated it's first entrance with mock enthusiasm.  I realized I am physically not the strong person I had imagined I would become when I was in my mid and late twenties; running 7 miles, go go go.  No, my life took a drastic turn but I can look back now on that diversion and feel quite proud of how I have coped with a life of limitations.  I am and always will be most proud of how I have chosen to share in others joy the way they celebrated mine on my birthday.  This illness is not a choice, but it does not come without a responsibility.  It has taught me how to teach others it's okay to be happy and live your life around me, I will not be bitter or jealous, I will be happy with you.  I will not pretend this is easy, it is perhaps the most difficult, but it is what I can give when so many others things I use to give have become limited.

There are many many days when I see no light, but others show it to me.  When I have no strength and others remind me I have done this before. When I feel so lost and someone shows me kindness that they don't even realize.  I am proud that I have learned from this rather than be defeated from it.  And I am proud that while I may envy my own life that I use to have and wish I could close my eyes tonight and wake up tomorrow and take the first flight to Paris - I have never wished others dream less or live small, instead I have pushed just the opposite and to live through and cherish their successes even more.

If this is what it means to get older, I will take it.  I will never not miss what use to be, but I will also never stop trying to be more, learn more and be better because of these circumstances.  I will look at that "former" self with such gratitude that I took the opportunities and didn't squander them, and I will continue to do the same now.  I cash in my joy every minute I can and embrace when I see others do the same.

This was taken from the page of  FB Susannah Grace
A woman living in England with Severe ME/CFS
Hope Is the Thing with Feathers

I would feel remiss if I did not stress, this is possible because I am healing.  There use to be no energy, not an ounce before that wasn't used to just get out of bed.   This has not been mind over matter, the strength to see a bit of light is because some of the chains have been lifted.  I read too many stories of so many people suffering with no change with this illness, not the financial resources to seek out different solutions, as far as this illness I have won the lottery.  I say this because do not hold those in chronic illness to a standard that healthy individuals can barely manage.  Be patient.  Be kind.  Be compassionate.

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