He is my hero – on having a partner with disabilities

When I first got involved with someone fifteen years my senior, a smoker, an alcoholic, with a history of mental disorders, I wasn’t really thinking about how health would effect our lives.  The deeper I fell in love with him, the more my crippling fear of loss made me worry about losing him, because statistically I knew that based on age alone he was likely to die before me.  I knew that you can never really know with life though, you can be two people in perfect health and in your prime, and lose someone to a car accident or mass shooting.  Life is never certain, and I dealt with my fears as best I could, though every day the thought of living without him someday haunts me and I hope that day never comes.  What I didn’t consider though was what happens along the way, how health is a fickle thing and can deteriorate in ways you don’t expect.

It’s eight years after we met and fell in love. I sit on a stool that gives a little when I move, and subdue the urge to bounce and swivel back and forth with the manic energy that so often inhabits my body.  I watch him lying flat on his back, straining to lift his leg up off that table at the physical therapists office.  One leg lift is a hard won feat, the ten that are asked of him make his face crease with intense pain and determination and he is breathing hard when he finishes the final one.  They say the cartilage in his knees is just gone, I know this means that despite the exercises, this new knee pain is now one more constant in his life.  We can tally it up with the back pain, the leg pain, the carpal tunnel, the constant headaches, the tremors, the memory loss and blackouts, and all the fucked up mental states that come and go. I think about how I’m starting to get pangs of pain here and there, my knees aching and cracking from time to time from a few years at jobs where I knelt on concrete while restraining large dogs as a vet tech.  I have a bit of a headache, probably didn’t drink enough water this morning, and that is enough to distract me and throw me off my game for the day.  I can’t imagine pain that is exponentially worst, being a constant background noise in my life.  This is the one area in which we don’t understand each other perfectly, because I have no frame of reference.

When I found out he was bi-polar I wasn’t phased.  We grew closer because of it, having the same condition and realizing how easy it was to relate to the spiraling mood shifts that could last months or years and change the color of the whole world for that time.  When I talked him past a period of suicidal ideation not long after we first met, I could see myself in him, I’d walked that path too many times on my own.  I wanted him to see he didn’t need to walk it alone, I committed to always be there through that.  As we grew close we revealed shattered pasts of trauma and abuse, our stories profoundly different, but our understanding of the invisible scars we each had was the same.  He overcame his alcoholism within the first six months after we met, mine persisted for a few years longer before I decided it was time, and with his borrowed strength I came out the other side.  We had our difficulties where mental health played a role, but there was always an undercurrent of empathy, understanding, and kinship.  I never doubted we could handle any of those curve balls that life threw at us, capricious manic moods, depressive spells, unexpected trauma triggers, we could take it.

The first time I got a call from his doctor at school to let me know they had sent him to the hospital, suspecting a heart attack, my world dropped away.  My fears of losing him went from background noise to a constant cacophony that disrupted every day functioning.  After a time it receded again to a background murmur, but always louder then it had been prior. It wasn’t a heart attack that time, although if it had been it would not have been his first.  Doctors, an ever growing list of medications, and a longer list of diagnoses, followed over the years.  This month we add a rheumatologist, we’ll have to figure out where they fit in with the neurologist, psychiatrist, urologist, cardiologist, endocrinologist, pulmonologist, and any others we’ve seen over the years or are now a constant part of life.  Assistive devices became normal, the glasses after the stroke in his left eye, the cane when his balance got worse, the handicap placard when the constant back and leg pain made walking long distances prohibitive.  When we met, we had more in common in our respective illnesses of the mental persuasion, but as more physical disabilities have entered his life in a steady march, I can’t relate to what he goes through because I have no lived experience to match.

He brings me flowers.  Going to the store is never easy, not with the panic attacks from being out around a lot of strangers, the pain with walking, the shortness of breath, the constant exhaustion.  I can’t function with a mild headache, his daily background is so much more then I think I could ever handle, and he bears it to bring me flowers just to see me smile.  He plays with his nephew, wrestling around knowing that it will cost him, that it means days of increased pain and less ability to devote the little energy he has to doing the few things that keep him sane.  He does it because he always puts others first and loves to bring them joy.  He sees himself as selfish because of how he withdraws when it all gets to be too much, and I see the selflessness in every time he pushes his body a little too far just to make someone else smile, knowing he’ll pay for it for days.

I go into nursing.  I love my job working with animals, but human medicine pays more and I know that I’ll be the one supporting us, and maybe I can learn skills that will help me better take care of him.  I try and help him advocate for his boundaries with me, to learn after a lifetime of short relationships with poor communication how to say no and express when something is too much.  I offer comfort, knowing I can’t take away all the pain, but wishing desperately that I could, and instead giving the little bit I can that barely makes a dent in it all. Our polycule is there, always understanding, always asking what they can do to make his life easier.  They are a constant source of compassion when he isn’t able to make a birthday because the pain is too great or the mental fog won’t clear that day.  My parents treat him like family, never commenting on me choosing someone so much older or with so many problems, but cheering him on as he fights the system for years to get disability.  With my own history of trauma, I am amazed at the love and empathy and support that is a stable source of comfort, so grateful for such wonderful people in our lives.

I sit there watching him struggle to lift his leg at the physical therapist, the pain creasing his face.  The laugh lines at the corners of his eyes that crinkle up when he smiles, a feature he hates because it shows his age but I love because it shows how much of his time is spent flashing that brilliant smile and laughing his laugh that lights up the room; those are lines of pain in this moment as he pushes through the exercise.  My manic fidgety energy calms for a moment and all I can think is how he is my hero.  I’ve been the stable one, the one who supports us, who guides us through the problems we’ve faced, but I’m not the strong one.  I know he breaks down and cries because he feels so weak.  I wish he could see himself through my eyes.  He is the man who brings me flowers, who plays with his nephew, who shares his most vulnerable moments of trauma, who inspired me into a career path I am now passionate about, who taught me a level of compassion I didn’t know possible, who makes me feel safe, and who has the strength to handle pain and adversity that many would crumble under.  He is the man I fear losing more then anything else because I can’t see a world without him.  I didn’t know what I would be getting into eight years ago when we met, and I also didn’t know heroes existed back then, but now I know they do, and I would never trade the time I share with mine for anything in the world.

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