Monday, October 26, 2015

On Relationships, some thoughts

On relationships.

Of all things I have done throughout the last 18 years with multiple sclerosis, being in a relationship is proving to be among the most difficult. I wrote a blog about a year and a half ago where I posited that I might never have a crush again, and I might never enter into another relationship because my "forever after" seemed so scary. I was defeated when I wrote the blog, deeply and profoundly sad. I was unable to determine what was harder: living inside of my body or dealing with my almost palpable sense of loneliness. I felt at that moment like I could live with one or the other, but not both. Both were suffocating me.

Shortly after I wrote that blog, I entered into a relationship. A relationship that was at once completely unexpected and completely inevitable. A relationship with my closest friend. Someone who knew both the intricacies of who I am and the complexities of the body I live in. Someone who, against all of her rational judgment and common sense, managed to fall in love with me – disease and all. At the inception of this relationship I felt an explosion of hope that I have not felt in decades. I believed that our love could conquer anything. There was a renewed sense of strength inside of me, as if my previous structure of fortitude that had long since been destroyed had been rebuilt. I believed our relationship could survive anything.

18 months later it truly has: it survived a weeklong stint in the hospital where I was on a ventilator in the ICU for three days, it survived an intensely and unnecessarily dramatic relationship with a previous caregiver, it survived the euthanasia of her best friend, Finnigan (the most perfect dog in the world). Our relationship has triumphed over more trials and tribulations throughout these 18 months than most couples encounter in 18 years. But I do not think that either one of us has escaped from these difficulties unscathed. In many ways I think we love each other more deeply than we ever did, and in other ways I think this relationship has taken a toll on each of us that neither of us could ever have anticipated.

I cannot hug her. If I want to take her out for dinner she needs to drive and she needs to feed me. If we want to go out of town for the weekend she needs to help me shower, get me on and off the toilet (and help me with everything in between), floss my teeth, scratch my nose, carry me out of my chair and into the bed when the day is over and carry me out of the bed and into my chair when the next day begins. But all of that only happens if we are able to find accessible accommodations to begin with – no stairs, wider doorways, a roll in shower and enough room in the bathroom and the bedroom for a motorized wheelchair. Meanwhile, on a daily basis I cannot even take a sip of water without her. Truly my needs are constant. And despite my effusive appreciation, and my absolutely enduring love I cannot even touch her face, put my arm around her, hold her hand or rub her back. I cannot cuddle, brush her hair out of her face or reach out and touch her reassuringly if she starts to cry. And those are the small things. I cannot help her chop firewood, stoke the woodstove, wash the dishes or cook meals. I literally cannot do anything. Imagine that. Imagine receiving love from someone with the physical capabilities of a mannequin. It would take a toll on you. And despite the fact that in this scenario I am the mannequin, it certainly takes a toll on me.

I think in a relationship like this honesty is extremely important. But there are two instances where honesty is not the best policy: 1) when she says something like "I wish you could put your arms around me" or 2) when I express my sense of inadequacy (which I am tempted to do with great frequency). I know that our relationship has so many seemingly insurmountable challenges, and I absolutely cannot imagine dating someone with my level of physical limitations, but I also know that in order for me to stay afloat in my quagmire of insecurity it does no good to hear about what my partner wishes I could do. Kelly understands this now, and she respects it, but I know that underneath her silence, sometimes the frustration remains. In the same vein, it does no good for me to articulate my repetitive fears of inadequacy, why are you with me? How can anyone be happy with me? Insecurity is so unattractive, and Kelly reminds me often that one of the things that attracted her to me in the beginning was my confidence. Honesty is of utmost importance in any relationship, but – as I've learned – some things are okay to save for my therapist.

Even my therapist, however, can't convince me that I am worthy of this relationship. That job is mine alone. So I took to the Internet in search of other people's stories with the firm belief that I am not the only person with a serious disability dating an able-bodied person. Granted I am not the best Internet searcher in the world, but I was unable to find one anecdote written from the perspective of the partner with a disability. I found some great blogs written by able-bodied partners of quadriplegics, articles with advice for caregivers, and a number of informative sites about "sex after spinal cord injury," but nothing about what it feels like to be the partner who cannot show affection. (Please feel free to point me in the direction of any blogs or articles that explain how to cope with being the inadequate partner.)

I know that right now there is a major need for me to shift my paradigm. I need to change my expectations of what a worthy partner should provide in a relationship. I do feel, however, that this is a paradigm Kelly and I should redefine together. Currently our relationship is so unbalanced and unfair which leaves me constantly on edge: when will my next request break the metaphorical camel's back? And despite the fact that my needs are so frequent, I honestly do try to prioritize what I ask for – just focus on something else and the itch will pass, just let the snot drip, nothing bad will happen if your nose runs into your mouth, stop, please stop that thinking about your uncomfortable left leg/behind/elbow etc. Sometimes it seems the only words out of my mouth start with "would you mind…" Or "will you please…" I am not exaggerating, it is constant; how then can I contribute to this relationship? And how can I prevent myself, as my eyes itch and my nose runs, from resenting the able-bodied love of my life who can so easily tend to her own needs? There is a large risk that my dueling emotions of guilt  (that leads to insecurity), and resentment  (that leads to bitterness) will converge and supersede the characteristics that make me who I am.  

Sometimes I feel like I try to keep my negative emotions at bay in the same way a child might play whack a mole at the fair: guilt rears its ugly head and I metaphorically beat it down with a mallet. Jealousy or resentment follow and I beat them down with even more vigor. And amidst this environment of me versus my Emotions, two thoughts manage to remain ever present: I hate this disease, and I love Kelly. As a partner I want to surprise her with a clean house and fresh flowers after she works a 14-hour day at Briarpatch, I want to cook dinner for her, run errands, rake the leaves, mow the lawn, meet for lunch during the week without my caregiver and most of all, I want to give her a hug. I cannot offer any of these things. What I can offer her is my devotion, my loyalty, my unconditional love, my patience and my steadfast support. Thus far, miraculously, these intangible pieces of me actually have been enough to triumph over the difficulties of an extremely difficult relationship. I just fear intangible characteristics may not always be enough.


Kristine said...

Not the same exact situation, but I make a daily habit of reading Dave's blog at . He writes about many aspects of his life with disability. But his relationship with Joe is one of the most beautiful I've ever observed. :) I definitely recommend reading through his blog, and I'm sure he'd be receptive if you wanted to reach out for advice or a listening ear.

Andrew said...

"What I can offer her is my devotion, my loyalty, my unconditional love, my patience and my steadfast support." Hmmm...sounds like a pretty good deal to me. Throw in a dripping nose and I'd take it any day.

Moira said...

Katie, your writing is so eloquent and moving. It speaks of your particular experience with telling detail (as the best writing does), and thus enables the reader to see the connection to his/her own experience, which may, at least on the surface, be far removed. Any of us who read what you write is invited to think about our own relationships and to learn from your analysis. And so, thank you.