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.
