Two days to go before my first appointment with an MS specialist, which will be at the Judith Jaffe MS Center, part of the Weill Cornell Medical College in New York City.
A month ago, when I received this diagnosis of PPMS and was desperate to find out more, I wanted to get to a specialist immediately. I would have walked (even with my gimpy foot) to New York if I thought it would get me in sooner. I wanted facts, predictions, treatments. I’m a planner. I wanted a plan.
Now that the time has come for this first appointment, I wish it would go away. I’m worried — very worried — that it will force me to confront realities that I have not wanted to face.
In many ways, this disease is much harsher than what I’ve let myself think about so far. Everyone goes through his or her own journey, but there are plenty of people in their thirties and forties in wheelchairs, or who have trouble speaking, or who have cognitive difficulties or changes in their vision, or who are bedridden. These changes can come as quickly as two or three years after the initial diagnosis.
I’m not saying my progression will be as swift, but I have to accept that it could be. I’m no less likely to face those harshest realities than the next guy with spots on the brain. There’s no fairness to it.
I wish I could put my head in the sand and live for just a little bit longer like this isn’t happening. But it is happening. And it will be managed somehow. Life each day is an exercise in adjusting expectations and finding the most positive and joyful way move ahead. But tonight and tomorrow night will be long nights, while I wonder what the next adjustments will be.
I’m thinking about you.
Thanks, Jerilyn –
Katie…. I dont know quite what to say. A good friend of mine from W&L has MS. She leads a wonderful, fulfilled, productive life with her two beautiful children and her wonderful husband. Is that patronizing? I, who pride myself on expression and the written word, am struggling here. Ive known Matt forever. He knew my husband before I did. I am bi polar…. I will never be “cured” but I live with a disease that I struggle to manage every day. Is that the same? I dont know. When I saw Matt’s post on Facebook, my heart dropped. You are a mother and dearly loved wife, of someone that I have cared about…. so I care about you. I hope you will keep up your blog. I have not followed it before…. but I will now. Bon Chance.
My boss told me that we are all in the process of managing our own humanity, and that has stuck with me. Bi-polar, MS, or one of a million other challenges — they’re all just part of being human, and we do the best we can with them. Thank you for support and your message.
When I was little and I’d watch the olympics, I’d always wish I could close my eyes and send all my strength and energy to one particular athlete. Like that gymnast about to take her last vault. Or the sprinter as he knelt at the starting block. Like maybe, if I just concentrated hard enough, I could will them that tiny edge to get that runner over the next hurdle.
Or now, help carry that friend through her next appointment. Covering you in thoughts, vibes, prayers, you name it.
Sarah, I know this feeling exactly. I still hold my breath when I hear someone attempting to sing a difficult note – as if my breath might help them instead. Thank you for sending me your thoughts and vibes. I appreciate your support!
We will be sending hugs and love and good wishes to you Wednesday, sweet Katie. We love you! Anya
Katie – My heart goes out to you and Matt through this journey. Thoughts are prayers are with you both. Sending postive “cousin” vibes your way..
Thank you, Lisa!
Katie, I had idea. My thoughts are with you during this journey. As an occupational therapist I often work with people with MS and they are all happy and productive. As a strong, smart, and determined woman, you will have no problem taking this diagnosis and turning it into an opportunity to overcome challenge. I have followed your blog and have enjoyed it very much. So … is this why you fell that one time when you were running?
Was thinking about you all day! Hope everything went well. Call us soon. We miss you guys.