8/17/2014 (Cassidy was almost 6, Tye was 4):
C – “I don’t know what I want to be when I grow up… There are so many choices!”
T – “When I grow up, I want to be a grown-up.”
I’m determined to get a draft of my memoir done before the 10th anniversary of my coma next April, but I have my work cut out for me. When piled up, a tower of medical records stretches over a foot into the air. Today, I cracked out my first folder.
I knew it would be tough. I didn’t, however, expect to relive 7 painful years through my husband’s eyes.
That’s a whole different kind of tough.
On the top of the pile sat a letter from an internist who was recommending that I have an evaluation at Mayo in Rochester. The memory of those days prior to Mayo, with no diagnosis yet in hand, came flooding back. He described “chronic severe right arm pain, suggestive of Reflex Sympathetic Dystrophy.” Obviously, this was no surprise to me… this diagnosis has become as much a part of me as my red hair. It doesn’t define me, but I would not be who I am without it. The letter continues: “(She has) diplopia and weakness consistent with Multiple Sclerosis though there is some question of heavy metal intoxication. She has also had difficulty with balance of thyroid hormone levels.” More memories came flooding back.
I am sitting in a chair in the kitchen, frozen by anxiety. I clutch the auto-injector, unable to see the needle that is about to administer a medication that I don’t need. Shaking, I place it against my thigh.
“Do you need me to do it?” Greg asks.
“No. I need to learn how.” I start to cry.
“Please let me help.”
“NO. I need to do this on my own.”
I remember the pain in his face as he watched me push the button. The needle felt like a sword, the medicine like poison. Tears flowing, I did everything I could to hold the injector still as the burning spread through my thigh and a welt started to form. Through it all, Greg stood by me. He supported me.
Unconditionally, he loved me.
I flipped the page over in the medical record folder. Despite the May sun shining through the window, the room felt cold to me. A full-page, single-spaced letter stared at me, daring me to read it without crying. It was from Greg to Dr. Hashmi, the doctor who ultimately was the first to believe that RSD was at the root of all my issues. I feel the need to state very clearly here that my husband is NOT a doctor. He is in sales for sporting technology. Still, he wrote, “Her symptoms over two months went from diplopia, to weakness, to late-night intense leg and arm spasms with red welts at the location of spasm, to fatigue, memory problems, myoclonic jerks, occasional slurred speech, joint stiffness, loss of balance to the point of using a cane to walk without falling or a wheelchair over the past 3 weeks, and pitting edema that reached its peak at 4+ last Friday.” Greg wrote about his concern over my mercury and bismuth levels, and why he felt that the Pepto Bismol I had been prescribed was causing many of my symptoms. He attached articles to support his arguments, and requested specific tests to prove his theories.
I flipped through more pages. More letters from Greg. To Greg. All about me. More research that he had done to prove his points, all of which ended up being accurate. More test results, all demonstrating changes that he predicted would be found.
I had to stop reading. When I decided to review my records, I had expected to relive my experiences. I hadn’t expected to relive his.
When Tye was 21 months old, we almost lost him. For 48 hours, my life was a living hell. I could not eat, or sleep, or breathe, or think, or ANYTHING. My cheeks were constantly wet from fresh tears, and my lungs felt full of cement. For 48 hours, I worried that I might lose someone who was central to my existence.
Greg lived like that for 7 years.
I will never understand everything my husband went through during my sickness. I will never understand the fears he probably still lives with every day. But this much I do know.
I am one hell of a lucky woman. I cannot imagine where I would be today, had Greg not written those letters. Had he not done that research. Had he not fought for someone – ANYONE – to believe me, to accurately diagnose me with RSD, which he knew I had. I was misdiagnosed by over THIRTY doctors in the United States. Most of them said I was a drug seeker… a head case. And yet he never gave up on me.
Without him, I know that I would have died.
How do you thank someone for that? For countless hours of research? For all the sleepless nights? For gently picking me up when my legs no longer supported me, and for wheeling me through Epcot so I had a reason to smile?
Last week was Greg’s 44th birthday. It’s impossible not to think about what my life would’ve been like had he never been born.
Thank God I will never know.
Greg… thank you for doing all the cooking, organizing my medications, and always making sure I had a soft pillow for my bad arm. Thank you for getting pissed at the doctors when they treated me like crap, and for writing them letters of gratitude when they actually cared. Thank you for being my rock, and loving me like no one has ever loved me before.
Thank you for teaching me the definition of “unconditional.”
Thank you for believing.
I cannot imagine the pain you suffered for those 7 years. How difficult it must have been to watch me suffer. To be the quarterback in a medical game for which you had no time to prepare… no training. To learn to speak their language – which you did. Fluently.
You will never know how much I love you for that.
Now, it’s my turn to give back. I know that this journey will involve rehashing some tough memories, but I also believe that our story is an important one to tell. Not just for patients like me, but for loved ones – like you – who suffered, too.
My first steps after the coma
For them, I need to hit that tower of records.
Let the journey begin… again.