Gift of an Extra "Spoon"

In a previous blog post, I briefly mentioned "The Spoon Theory" which accurately, and yet in an almost heartbreaking manner, describes how I must manage my energy each moment of every day. This spoon theory was written by Christine Miserandino who struggles with Lupus.  In this case, the illness is irrelevant. What is relevant is the fact that most chronic illnesses sap all of our energy and we must figure out the best way to manage and minimize this problem in order to "live", not just "survive". 

Although I have always struggled in finding the best way to describe this ongoing problem to family and friends so they can accurately understand my now often flaky behavior, Christine has concisely and eloquently found the words to graphically describe this struggle in energy management in her "Spoon Theory".  

Before you continue with what I have written here, I urge you to read Christine's "Spoon Theory" so you will understand what I am referring to in this post.  Here is a link to her blog...  The Spoon Theory.

Before I get back on topic, I should add a little more background information here first.

As with many of the patients suffering with my rare illness, my road to diagnosis was long... very long.  I went through at least two dozen doctors.  Some doctors claimed my issue was stress and anxiety... I fired them (after giving them a piece of my mind, drill-sergeant-style).  Some doctors knew my illness was deeply serious and urged me to seek a more experienced specialist.  Some doctors cracked the books in their quest to help me and to get to the root of my illness.  Some doctors found incidental findings like a brain tumor, cancer, and much more extensive, irreparable spinal injuries than the Air Force cared to admit.  Eventually, a new primary care doctor would enter my healthcare team and, as luck would have it, she had family experience with my rare illness and therefore knew how to effectively manage my healthcare. (And, I should point out, it is now about ten years later and she is still doing an outstanding job!)

Throughout this diagnostic process which took years, a couple of dozen doctors and multiple hospitals as well as treatment for the illnesses in the incidental findings, I became active in support groups.  Not long after obtaining a real diagnosis of Mast Cell Disease - Systemic Mastocytosis and Cutaneous Mastocytosis, I found myself writing and submitting papers to national support groups.  Eventually, I found myself on a board and constantly being contacted by newly diagnosed, sometimes frantic patients seeking answers and advice.

After a few years of active participation in these national support groups and boards, I found myself watching far too many other patients die from this illness. As a result, I felt I was at a point where these support groups were no longer helping me and actually hurting my frame of mind.  I decided it was time to leave these groups. I said my goodbyes and started to live my life again as best as my health would allow.

Every now and then, a new patient would find my published papers online and contact me for some advice or even for some kind, supportive words.  One of these patients was Laura. Laura is the patient who just recently directed me toward this blog of Christine's about "The Spoon Theory".

I've been struggling with this illness for longer than most.  In many ways, this is good news.  It is certainly better than the other option.  Also good news is the fact that my health has sort of stagnated in recent years... it hasn't improved, but it hasn't deteriorated much either.  You would think that after struggling with this illness for so long that I would be able to easily explain all aspects of this illness to anyone.  Well, that simply is not the case.

I've always had difficulty getting friends and family to understand how easily fatigued I can get. This is further complicated by the fact that for my entire healthy adult life, I had boundless energy, strength and rarely slept.  I lived through my career in the Air Force and DOD by only taking short catnaps.  I worked hard and played hard always doing something physically demanding and pushing my body beyond its limits.  I even once had a basketball coach who would stand on the sidelines cheering every one of my more athletic plays by scrambling along the sidelines, arms outstretched over his head, fists clenched, excitedly screaming at the top of his lungs "MAN OF STEEL!"  I truly had boundless energy before encountering this illness.

"Fatigue".  What do you think of when someone says "fatigue"? I suspect many of the healthy people reading this think of a time when you slept in until 1pm because you were just sooo tired. Maybe you think of a time when you ran a mini-marathon and were exhausted and sore for a day or two.

Maybe, you are one of the few who required hospitalization after contracting mononucleosis? Well, if so, you are getting closer to understanding the fatigue I am referring to here but there is still a long way to go... and, this fatigue I am referring to is permanent, not just while recovering from an acute illness like mono. This fatigue isn't simply about "staying awake" nor just about physical ability.  This fatigue is so overwhelming that it is also about mental acuity and emotional stability. This fatigue is so overwhelming at times that it is about whether or not one can actually 'function' as a human being and complete mundane, mindless everyday tasks.

"The Spoon Theory" does an excellent job at describing my daily struggle with energy management.  It does an excellent job at describing the struggle that every Systemic Mastocytosis patient experiences.  Unfortunately, this struggle is frustratingly compounded whenever a family member or friend does not understand how debilitating this 'fatigue' truly is for us.  

Understanding is one of the core concepts I wrote about years ago.  When asked what I felt those suffering from chronic illness need from their family and friends, my answer was always "dignity and understanding".  Understanding is key.

Now, back on topic...

Laura contacted me a few years ago asking for advice and seeking some kind words of support because she was a new patient now facing everything I had already experienced but which was now 'normal' for me each and every day. We've written hundreds of letters back and forth.  We've talked on the telephone. We've shared a lot about our experiences and our struggles. I've learned much about her retired Air Force husband, Stu, and she has learned much about and even befriended Sheila. Much has happened with Laura's health and healthcare over the past few years and I've always tried to be there to help Laura understand. 

Recently, however, Laura taught me about the need for "spoons".  

I've written papers for support groups about energy management but always felt that there must be a better way to get those in our lives to understand.  I've tediously explained energy management to scores of newly diagnosed patients.  But, "the spoon theory"... it is so simple... it is so easy to understand... it is so accurate, clear and concise that this theory brings tears to my eyes.  Everyone should read it.  I mean everyone!

I could definitely use more spoons each day.  Far too many days I find I have used all my spoons long before lunchtime.  Some days I don't even get to use all my spoons because my health crashes. Some days I borrow spoons from tomorrow's spoons and then it takes me days to get back on track.  A spoon would be perhaps the most useful and amazing gift a Systemic Mastocytosis patient could ever receive.  

This Christmas, at a time when I was completely spent of all energy, Laura sent me an angel in the form of stained glass.  In this angel's heart is an extra "spoon" for me.

Now, let's think about this more deeply.  For someone like myself who fears many people do not understand how I struggle daily with managing my energy, it is heartwarming that someone would gift 'energy' to me... if even symbolically.  For another patient with the same energy struggles to expend the energy that Laura has expended to create this gift in order to just symbolically gift me energy is reminiscent of O. Henry's story, The Gift of the Magi.

As if that is not enough, not only has Laura sent me this beautiful gift of an angel carrying an extra "spoon" in her heart for me, but she has made countless angels for other Systemic Mastocytosis patients and their families. 

Last I heard, Laura is now selling these angel ornaments and a portion of each sale goes to The Mastocytosis Society.

If you've made it this far in this long-winded monologue of chronic illness struggles, misunderstanding and spoons, I suspect Christine's "Spoon Theory" connected with you and captured your interest.  And that is another gift for me... a little bit more understanding for a wider audience.  But the main reason for this blog post is to thank Laura. Thank you, Laura, for the beautiful Christmas ornament... thank you for the gift of an extra "spoon"... but, most of all, thank you for your understanding.

I decided to shoot a couple of decent photos of this angel ornament.  I strung up some fishing line in front of our Christmas tree, set up a few studio lights, chose a few different lenses I thought might be effective and shot some photos of the ornament with our lit Christmas tree in the background. When I saw the combination of photos I shot, I came up with this idea of a 4" x 8" card....

Thanks again, Laura!