MS and Friends: Not All Are Created Equal

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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friendship, explaining disease to others

Jennifer Silver Linings
I write in an effort to offer enlightenment. Yet, so often I find I am the one to receive an education. Such was the case with my column on relationships and MS — or more pointedly, the feedback I received.

While MS has inflicted an unenviable strain on my relationship, I hear those of you who manage every struggle, side effect, and aspect of MS solo. My immense respect for all that you continue to battle. While I cannot speak to doing that myself, I do understand how this disease has the potential to freak out people so that one day, POOF, they are gone. As they say, hindsight is 20/20, and as much as I would like to blame MS for the demise of one particular friendship, it was just an excuse for an otherwise weak person to bolt.

I am a woman’s woman, a girl’s girl. While I am right at home watching football in a sports bar, I thrive among my closest females. I can count on one hand those women with whom I share everything, and am a firm believer in quality over quantity. My many acquaintances bring me immense enjoyment while my close friends bring fulfillment. Each possesses a uniqueness unlike the other and offer my world beauty and light — without which it certainly would be a great deal darker.

One summer day, my world dimmed and stayed dark for almost an entire year.

I met her at a women’s retreat. You know, the kind where you max out on self-awareness and enlightenment, yet feel utterly exposed. We gravitated toward one another in post-workshop classes, sharing a coffee before, or the meaning of life after. To the outside world, we had our stuff together, yet we intrinsically knew where the other bled and why. It was a friendship built on strength through vulnerability, yet I was never fully transparent. I knew she loved my daring optimism, but also was deathly afraid of anything less, as if she might catch reality like a plague.

My reality changed in November 2010, the day I awoke unable to speak, paralyzed on my right side and bridled with searing needle-like pain. Shortly afterward, I was diagnosed with MS, and from that moment on I was the recipient of every “cure yourself of MS” book, CD, testimonial, mantra, and theory available. Each time I pointed out MS had no cure, I was dubbed “negative.” I have been called many things in my life, but negative was not among them before then. I enabled this idiocy by allowing only so much of myself to be seen, as somehow (again 20/20), my perception of our friendship was worth it.

Over the next several years, we grew close both as family and friends, as she had few of either. Later, it occurred to me how defining that was, as she had a need for inanimate grandeur while I hungered for intrinsic fulfillment. She rescued wealth. I rescued dogs. We were so different in our life goals, yet she seemed hungry for, and equally perplexed by, my effortless happiness. Nevertheless, I never saw it coming.

I had been to my neurologist after my 18th round of Tysabri (natalizumab), and although I was JC positive, I had not developed antibodies until that point. I no longer could stay on Tysabri, as it would be ineffective. I also had begun to show signs of progressive MS, so I was in a quandary and feeling scared. Simultaneously, my husband faced some serious health issues of his own, and I hopped off my optimistic cloud and into action mode. My frenetic self clashed hard with my friend’s need to have me be good, and in the midst of sharing tears and fears, she had the audacity to call me negative.

I had it, and I called her on it along with some of her own things I found necessary to illuminate. I do not condone the things I said, even if they were my truth, as it never is conducive to hurt another in the name of justification or anything else. I felt bad as a human being and sad at what had transpired, yet nothing prepared me for the icy reception I received upon my apology. My friend was impermeable. The girl with whom I had shared more than 10 years of laughter, adventures, holidays, and life, was no longer. In a heartbeat, she cut the cord, and it was at that time I realized I was just a disposable commodity — my value defunct.

My family was as flummoxed as I was and my heart hurt. Bewildered, I reflected on who I was with her. I was not myself, but whom she needed me to be, and I perpetuated that by acting the part far too long. When I hurt, I smiled. When my disease raged, I hid. When I needed comfort, I looked elsewhere. Our friendship was built on smoke and mirrors, as my reality scared her. My reality scared me, but I dared not expose to what extent, as I subconsciously knew the consequence.

She left my life many years ago, and it took me a good year for the hurt to fade and indifference to settle in. When my hands finally let go, the strengthening of not only myself, but also other friendships, graced me. My diagnosis with MS forever changed and ultimately ended our friendship, but it was not the fault of my disease or me. While I climbed higher to survive, she could not maintain oxygen.

I continue to climb.

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Rashmi avatar

Rashmi

An eyeopener... thanks for sharing and being so open...

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Don Mills avatar

Don Mills

There is a line in the Thin Lizzy song "The boys are back in town" that guides the way I deal with those who can't handle my MS diagnosis."If that chick doesn't wanna know...forget her
" Some people will never understand what an MS sufferer has to deal with. Constant explanations don't seem to work so I just cut the cord.I stay happier that way.

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Deanna avatar

Deanna

Thank you so much for sharing that was beautiful my heart hurts for you and I know how you feel when it comes to giving up on trying to explain over and over to people you've known your entire life what it feels like to live with Stupid ASS! MS!...?✌✊✋

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