One year ago (October), I was sitting in a hospital gown staring out at a dreary day through a hospital window, sure that the neurologist was going to come in and affirm all my fears that I had disase. As Jake laid beside me and said all the right words, my fears were calmed and the smile returned to my face as always. When Dr. Robinson came into the room she looked at me for a second and then it was back to the floor and folder before her, as she delivered the news that I did, in fact have a confirmed case of MS. She barely breathed inbetween sentences describing what I had and all the while, all I secretly wished for was for her to look me in the eyes. Well, I got what I wished for when she was done with the medical jargon. She looked me right in the eyes and said, “I’m sorry”. She repeated those two simple words that are suppose to make someone feel better and instead it was like a dagger through my soul. Why was this incredibly intelligent, beautiful person looking into my smiling (fake at the time) face and saying “I’m Sorry”? What was this disease about to do to me?
Fast forward one year and a few days. I had my yearly MRI a couple weeks ago and have been patiently waiting for the results. I knew in my heart what the results were going to be, but there was definitely a fear factor kicking in thinking about the worse case scenario. What if it had progressed exponentially? Let me recap my year a bit first, before I tell you about my visit to Dr. Robinson last night. For many of you that follow the blog, you already know many of the steps that I have taken to deal with those two powerful letters that lie before my Name. First thing was first…making the decision not to take the medication. I didn’t have any other reason for doing so besides the fact that it wasn’t sitting easily with me (emotionally). There was something so strong inside that felt discontent taking that shot each week. I did try and the anxiety just got stronger and stronger. If I wasn’t going to take the meds then what was I going to do to prove that I could tame it. First step…no more processed food. Out with the bad, in with the good…in with the good has been the learning curve and the hardest part. Was changing my diet enough? You know what? I am going to save all these steps for it’s own post because I just have to get to the doctor appointment:)
It was no accident that my appointment got scheduled for the end of the day. We were set to go in at 4:30 and we didn’t get in until 5:15. As Jake and I sat in the room we were joking, laughing and being us. I really didn’t feel anything besides excitement to see Dr. Robinson and share my journey with her. I told Jake that I was going to hug her right off the bat so that I could break the ice and get her to look at me right away. Minutes later she came in and barely looked at me and went right to the counter and starting reading the papers in the folder. I sat a little heart broken and dumbfounded. She stops and looks up and says, “and my nurse says that you have chosen not to take the Avonnex, is that right?” I say, “that’s right” and I feel the glimmer of defensiveness kicking in. I suppress it and listen further. What she basically says is that the bad news is that the MRI confirms that it is in fact MS. It has in fact progressed. The good news…it’s not going at the rate we expected it to go, especially going against the drugs. Let’s break this moment up with a picture I took the other night, that Jake told me not to share because I look so horrible and it might give people nightmares:) I sit in front of my neurologist with a black eye and bruising across my whole right side of my forehead from a blow (or elbow) to the head the other night at volleyball. A guy (Jake’s size) went up for the ball and I got pushed back into him and his elbow about knocked me out. I felt my head and dropped to the ground and felt the cartoon-like lump protruding immediately. My knight is shining armor came running to my side and pulled my hand away to look at the damage and everyone gasped. It was bad. Here it is after the lump started to spread.
So I sit in front of Dr. Robinson, who used to be a professional v-ball player, and yet I still haven’t even had a moment yet to tell her that that is how I got the bruising and trauma to my head. Before I went into her office that day I told Jake, “I am going to go impact her life today. I am going to go in there and get my connection back that we had for a moment in the hospital room towards the end of my visit. Well, it happened. There was a moment, after I listened to her talk on the drugs and the scares of what this disease can do to me. That I am not a case (because it is on my spine) that has room to play with the disease. When it was my turn to talk, this is what I said…
“I sat here and listened to all your advice and there isn’t any part of it the I don’t get. I get that this is serious and I had to really tell myself to not get defensive as I listened to you. I didn’t and in fact, there were definitely moments where I was so interested that I was questioning my journey and wanting to jump on the life raft that you were putting in front of me. But let me tell why I didn’t take the meds. It wasn’t that I couldn’t… because I actually didn’t mind it and I knew I would get used to it. It was a combination of seeing a naturapath, reading on the Swank diet, doing EFT with My Happiness Guru (Herman), and an incredibly uneasy feeling that arose when I was suppose to take my third dose. Oh, and going up to OHSU to meet the Guru that you told me would have interest in me and basically told me I would be an idiot not to take the drugs. (are you still thinking of that horrible picture of me above..lol) The only thing I can tall you Dr. Robinson is that I know that this is exactly where I am suppose to be. In hindsight, I know that I would have never made the changes that have blessed my life if I had taken the meds. It was a decision I can’t quite explain, but I can assure you that I am EXACTLY where I am suppose to be. Even if this disease put me in a wheelchair or even death, I still have learned more than I ever thought I was capable of and the reward is that I am proud of myself. Not proud of myself because I am being the good patient that does exactly what her doctors tell her to do. I am proud that I have learned so much about me and that I am “living life” for the first time and life is no longer living me.” There was even more said, and Jake jumped in with beautifully, comforting words that made me just glow. All the while she sees me now. I am telling her about my journey. Where I am with my photography. The alarm inside me that I will always listen to. The fact that I want her to come play volleyball with me and I have to talk to her about getting rid of the expectations that she is putting on herself and keeping her from doing something she loves. I swear I see tears in her eyes at some point. The connection is so strong and more than I imagined and she is no longer a neurologist sitting in front of us. She is an amazing woman that cares about me enough to engage into my life. She tells me that I am braze and that she thinks that I am amazing. I don’t have to tell you how incredible I felt when she walked over to me at the end of the appointment and hugged me tightly and then to Jake.
So, am I scared that this is in fact, MS and that there are new spots and the progression is there. No. Because what I heard her say was that my case is amazing. I told her that I want it to be a miracle in her medicals eyes soon. I want her to chalk me up as a medical mystery. So I know that I am on the right path. I am an inspiration and I am living extraordinarily. MS has brought a new desire to connect and an openness that has brought greatness into my life. It is a blessing and I am not going to waste it. I matter and my story is interesting because it is mine. I own it and I am proud of it. I have courage and I am an optimist (never the words I would have EVER used to describe myself one year ago)! Enjoy what you do and who you are. Go find your courage to be you today! Here’s to my first year with a life-altering di…ease. I am more at ease with life than ever. Thank you Jake for supporting me in more ways than I thought were humanly impossible. You are my inspiration and my rock and it meant the world that you were by my side for that most amazing moment! I love you and I’m sorry that I ruined your b-day by getting that big ol’ goose egg on my dome:)