“The Stony Limits Do Not Hold Love Out…”

Two weeks ago two friends went shopping. They had formed a bond around this happening 20-years ago when they first met. Back when they shopped for treasures on their college budgets in unexpected places. What they found was inconsequential. It only served as goalposts of their time together. This ritual provided a space where they shared conversation, laughter, ideas, each punctuated by the “shzing” of hangers sliding across racks and calls from the next aisle to “checkout” the discovery. Value City and local thrift stores were the inauspicious places they found these looked-over gems or rock bottom remainders that no one had recognized for what they were.  Those shopping trips were the comfortable dance to all the best songs they played over and over and over.

The girls are now women; mothers, wives and professionals.  They don’t have to reach too far down to find the college girls they once were together. Both have managed to keep that self close by. So when they see each other no matter how much time has passed since the last visit, they find the understanding and love easily accessible, below the skin nuanced by the years they’ve lived since. And as they shopped two weeks ago, they fell into the grooves established decades prior. Though this time it was different. This time they both provided more than memories and a comfort of a shared history. This time they needed each other for physical support as they went through the motions of their historic ritual.  While one endures the disease she’s had since they first met, the other faces a new, more challenging diagnosis that shakes the ground they have always felt secure on.

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Finding a way to absorb the reality of Linda’s cancer has left me immobilized… yet flailing. I’m desperately trying to get my arms around all that she is and what she means in my life. As the weeks have passed I have found the place deep inside that only she can touch and I’ve rested there. Within that space has come an outpouring of emotion and words in an unstoppable flow. It’s the soundtrack of our 20-year friendship – a melodic hum that exists beneath everything. And while my feelings are often beyond description, I am taking this time to honor her and what we share. I know it will empower me from now on as I continue to read and reflect on this most remarkable friendship.

So here goes…

I met Linda P. a few months after my MS diagnosis. Tumultuous is not a strong enough term to describe the few years leading up to the Fall of 1988.  In short, my parent’s sudden divorce and my mom’s move to Florida led me in desperation to an abusive boyfriend. Escaping that, I moved to Maryland to attend the state university at College Park and after three semesters, I transferred to a different campus in search of a something more meaningful both academically and personally. I was getting used to making these big decisions on my own.

That summer before I started at the new campus began with my 20th birthday and the out-of-nowhere diagnosis of Multiple Sclerosis. It was a shocking blow to my fragile and forced independence. But in spite of my fear, I continued on by myself looking for a community to be a part of while finishing my film degree. Just a few weeks after I moved to the Baltimore suburbs and started at the UMBC film program, I found a group of people who felt good to be around. Just as the cream rises to the surface, so did Linda. It quickly became clear that we had something special. You know how sometimes you meet someone and they match you in ways you didn’t know possible? Well that was how it was with Linda. And as I search for descriptors to convey all that we have, I get lost in the reverie of everyday moments and how it felt back then to have her energy with me all the time.

Trying to describe a friendship in words is not unlike trying to sing a painting.  I’m not sure if it was her spirited way of appreciating every moment that drew me in or her adorable personality.  At this time, making new friends and meeting new people wasn’t easy. I was unsure and nervous about what MS would mean for me and this seemed transparent in my insecure presence.  Many people couldn’t deal with this uncertain reality of mine and were obvious in their apprehension. But Linda never shied away. She clearly accepted every part of who I was in ways I could not yet do for myself. She gave new meaning and comfort to my world.

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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.