Losing Someone Twice

How do I write about a person that is (was, continues to be) so present ( important, instrumental, needed, loved, ) in my every day. I always knew how significant Linda Morgante was in my life. When she left the role of nurse clinician at Dr. Miller’s office more than a year ago I was able to tell her just that. The sense of loss at that time was immense. She was the very wise, sensitive, caring, strengthening part of my regular visits. Yet she was more than that. How do you put in to words a relationship that is/was so profound? Every comparison, every model falls short.

When you are diagnosed with MS it is at first a new label, an identity that you don’t identify with. In my case the diagnosis preceded the forming of my identity. At 20 years old I was still discovering who I am and learning how to be an individual, separate of my family. Who I am today is inseparable with the label. MS has defined me. It has inspired me and motivated me in the challenges it throws my way. It raises the bar of what I can manage, deal with, and incorporate in to my everyday. I am defined and redefined on a regular basis. It is what living with a constantly changing, totally unpredictable, completely unique, and currently incurable disease does to you.

So as I am constantly reinventing myself I have a guide.

Of course there are others who guide me. I have a supportive family that helps me manage my life with MS, logistically and emotionally. In those roles I’m supported, loved and needed. That need is wonderful. I find strength in the role I play in my family as a mother, wife, daughter, sister and friend – I know how much I need to be there for my family. It’s reciprocal. Maybe that’s where Linda’s role in my life is so unique. For 10 plus years Linda guided me through the everyday of living with MS. She was to me the mother, sister, friend, confidant, and also the nurse. Just the sound of her voice was enough to put me at ease. She was completely available to me as her life was dedicated to support people managing MS. She was not only the resource of a wealth of information, she could listen like no one I know in the world of medicine. She sympathized without being dramatic or condescending. She knew me in such a unique way. I struggle to find a parallel. I do know that I never had to explain myself beyond the specifics of my symptoms. Her every response was exactly what I needed.

While still at my doctor’s office she supported me in my work. She filled out surveys and appeared in my prototype website that represented my thesis. She encouraged me in my efforts to get the site produced, connecting me with people at the MS Society locally and nationally. She exhausted the role of friend, mentor and nurse. After she left the practice, Linda went to teach students how to be a chronic care nurse at St. Joseph’s College. I told her that the only reason I was letting her leave without a fight was so that she could make more nurses like her.

She passed away a short time ago at 55. She courageously fought an aggressive cancer. The news of her passing was an outright shock. It was a haulting train wreck in my life.

I spent a week after the news of her passing in a daze. The Kubler-Ross stages had started to play out as I tried to find a place for myself in this world without Linda. To say this was/is a difficult time is an understatement. Attending her memorial service helped. It was not surprising to find myself in this enormous crowd. She touched so many people as she did me. It was soothing to hear how the eulogists spoke of their relationship with Linda. Her colleagues, her husband, her friends– all told me about a Linda I did not know. The person she was along side of the Linda I relied on, I cherished. But the information that was so healing was what her last months were like. I didn’t know she was ill. I had busied myself with the process of work and life and let months pass without connecting to her. Hearing how she handled herself to the very end was so significant in my effort to accept the unimaginable. It is not surprising to learn that she was optimistic to the end. Also not surprising is that she was more concerned about everyone else in her life. This was also seen in her instructions for the memorial crowd to take a drink and celebrate her. That was easy to do for a moment.

What was hard was to continue on in a world without her. Although I had been living with MS for 8 years when I met her, she filled a role that I wasn’t aware existed. She was my first guide, companion, confidant, friend, and teacher in this life of MS. A teacher in my life of learning. I carried her with me throughout my life in ways that I didn’t even realize. Every day as I manage my life with MS I remember what she taught me. What happened subconsciously over the years has now become painfully sharpened. Every injection, every catheter, every throng of spastic pain, every question that I have every single day- I remember what she taught me. Her voice is always alive in my mind putting me at ease. In this way she will always be in my present tense. The magnificent person she was/is will never end in my life. It is that gift that is always in the now… the present tense.

Linda, I will be learning from you forever. I love you for all that you gave me, and what you continue to give me, every day.
Thank you.

Teach it Forward – The dentist epsiode

Last week I went to visit my dentist (something I do all too often!) and he asked how my website is going. I began to describe the status, and referred to my online experiences that bring out anxieties. He saw that as a sign to wax poetic about all of his patients with MS who he’s watched get progressively worse as they have come and gone over the years.What was he thinking? Does he know that even though it doesn’t look like it, I have the same MS as the patients he was describing. I may be one of those people who comes and goes from his office, for him to watch as I lose abilities. These are the images I would leave his office with.So I paused. Clearly he does not understand the variable nature of this disease. So I will have to explain. ” That is just the information I’m trying to avoid.” Now I am the teacher.This discussion is not something I would have attempted early on in my disease. I would have been wounded, not said anything, and left the office angry. After 19 years of MS my approach has changed.This is my MS; it has shaped the person I am today. Once I took ownership of it I realized that better educating the people in my world helped me feel more comfortable. The better understood I am, the less explaining I need to do. But it also has a greater effect. MS is not rare. There are many people “walking” around with this diagnosis. The more individuals in the world who understand what MS is, and what it isn’t the better off we, the diagnosed people, are.Teach it forward.Hopefully the next time a person with MS sits in my dentist’s chair he won’t ramble on about details that would make his patient feel anxious, and his patient will feel better understood. I know I will.

In the Beginning

In 1988 after an attempt at learning about my new diagnosis in a pre-Internet age, I swore of an MS education as it only served to fuel my fears about my unpredictable future. Having an incurable disease that is unique to each individual and constantly changing requires a life of learning. What I need to know to manage and treat my symptoms is always new. In addition the medical communities understanding is constantly evolving. If I want to stay current on my treatment, I need to be in the know. Yet to this day, when I approach learning on the Internet, I’m afraid of what I’m going to be exposed to you. Just today I was reading up on existing blogs and I learned about an MS symptom I had never heard of. Now I have more to lose sleep over.

The purpose of this blog is to document what it is to be a life-long learner with Multiple Sclerosis. I will share my experiences and invite you to share yours. Thoughts on how you learn, if the process brings out anxiety, what type of information you are looking for and when you are most often in the need to know, are all welcome. Anything you care to impart about your research and learning process. I do ask that if you decide to post that you keep it non-specific. I’d rather this blog not be a source for frightening information.

Thanks for reading…