Chapter 20: Surgery is a success at Mayo

I thought about those who weren’t as lucky to survive, with their families never getting the records, believing that their loved one just had complications during their procedures.  I wanted to encourage other patients to get their records, to be more assertive, and to ask questions.  Everyone was talking about health care reform.  My question was, why create another system before changing the present one, where the patient has no voice or recourse for what they have been put through?  When the Dean Administration gave me no alternative, or even personal attention to my complaint, I decided to see the counselor that was recommended, even though I felt that she would be helpless to answer these questions.  

The counselor I saw was very patient.  She listened to my story for more than an hour.  Her response was, “Colleen, you understand what has happened to you.  I don’t believe you need a diagnosis of emotional instability to add to your medical history.  My suggestion is that you take your records and write a complete history of what has happened to you.”  I was relieved that this doctor was not looking for another patient.  She never even charged me for the 1. 5 hours, knowing she would have to diagnose me as having a mental health issue if she did.  She assured me that if I ever wanted to return, she would be there for me, and she wanted me to let her know how my life proceeded.  I left the counselor feeling relieved, yet troubled and overwhelmed by the thought of writing.  I had written an outline of my medical history before, but this was different because I would be writing about my feelings and experiences.  I pondered it for a few months and her suggestion gnawed at me until I knew I needed to try putting my story together. 

This was a very emotional task for me.  I also felt intimidated because I was not an English major, and additionally, I wondered if these things might not have happened to me if I had been more educated in the first place.  However, I was determined to proceed and hopefully have my family understand all the events that took so much of their time and energy.  Maybe it would even help someone else from going through a similar experience.  It took me months, a little at a time, page by page, to read my records again, taking notes and trying to include my feelings.  When I finished, I had 20 or more pages written, but I knew I needed help to better express my story.  I couldn’t afford a professional writer, but the senior center had a writing assistance program.  I started, but I only went a few times.  It was primarily for funny or very short stories.  Mine was just too long and complicated to even bring up in these sessions.   I then learned about the writing assistance at one of the public libraries.  This was the turning point in my crusade and one of the best experiences of my life.  The writing assistance was better than any kind of counseling I could have received.  The empathy, interest, and concern these writing assistants had made all of what I had been through worth getting written.  Time was limited each week, sometimes only a half hour, but I never missed a session.  I have them to thank for not just their writing but for their compassion, which gave me back my self-esteem.  I want to thank my friend Kay Hiller, Ileana Rodriguez, and those people who helped with the writing of this history: A.B. Orlik, Mark Estante, Rebecca Lorimer, Beth Godbee, Michael Dimmick, Kim Moreland, Annie Massa-MacLeod, and Rob McAlear. 

As for my physical health, the risks of the surgeries I had were serious, and I was lucky that I was healthy enough to survive.   Almost a year after my surgery at the Mayo Clinic, I was delighted that I could walk any distance without the left leg pain I had experienced for so many years, but I knew that I would never have had that drastic surgery if my condition would have been dealt with 10 years earlier.  Now, it has been 3 years since I had my surgery, and I still have not had any pain in the calf of my left leg.  I will continue to work with Mayo Clinic if other complications arise, particularly related to scar tissue and nerve damage from surgeries.  I have reminders of other surgeries and other pain, but not in the calf – and unlike the calf, those things don’t stop me from walking.  Despite those other daily pains, nerve damage, and scar tissue, I can go to concerts, do things with friends, and most importantly, I can dance again. 

If you should read Dr. Gloviczki’s report to my primary doctor after my surgery, you will see how thoroughly they reviewed my past history.  Every time I see Dr. Gloviczki, I am so filled with gratitude that I want to hug him.  The care I received at the Mayo Clinic is the type of care that every patient should receive, without weeks, months, and years of waiting.  People linger in medical systems that do not offer them solutions for far too long – and sometimes it is too late. 

I hope that this story enlightens not only my family, but other patients in the future.  It is easy for a patient to give up when they feel like no one is listening.  When we are violated, we feel powerless to do anything and we often accept it, an acquiescence that enables further abuse.  We need to be more aware of what happens to us in the medical system and be willing to share our stories.  There are many good doctors out there, and hopefully they will listen to our stories.  Maybe there will be doctors with a little bit of Dr. Timmerman inside of them hears our stories, and they will try to change or make a difference in the system.