These Things are Harder to Share

I’ve been more open on this blog than I planned from the start.  It’s been very nice to have a place to journal.  I haven’t shared this blog with anyone from my personal life, but I have linked to it from other places like The Mighty.  It’s tricky because anything you publish on the internet can be seen be anyone.  And yet I am sharing more and more private feelings here. It’s given me pause today because a couple of nights ago, my husband and I had our first notable conflict.  While I don’t want to air my dirty laundry, I think it’s important to explore this.

Relationships are already work.  They face many stressors.  Add chronic illness to the mix and you get more stressors.  I don’t always understand how my husband deals with our challenges and I often feel like he puts up a brave face for me.  For example, he was so warm and positive when we went to visit his ailing grandmother, then he would show that he was quite distraught after we left.  I worry he does this with me, but has no one to show his pain to.  I don’t know how to free him of that.  My husband and I have made a lot of plans together.  My health issues are always throwing a wrench into the works.  We were living in San Francisco and planned to move back down to Southern California after our wedding.  My health issues disintegrated so fast that we moved down months ahead of schedule for more family support.  And we moved to a place conveniently across the street from my parents.  Here we planned to live for a couple years and try to have a baby.  We’d save up and buy a house next.  Then, only after months of living here,  came the wheelchair and all the trouble with the stairs.  So, I wanted a more accessible home and my timing was way ahead of the planned schedule.  We hadn’t saved up yet.  And renting again could mean no stairs, but wouldn’t mean wheelchair accessible.  It seems one almost always has to buy and remodel for wheelchair accessibility around here.  And to top it all off, I still wanted to try for kids which means a lot of extra expense with nannies or whatever childcare option we would need to assist me.

This is a lot of pressure not just for me, but perhaps even more so for my husband who is now the only one working and is also basically my primary care giver.  This is not what he signed up for.   When we got engaged, I was ill, undiagnosed, but also what I called “functional”- I was holding a job and living alone.  It seems I can only do “functional” for short bits of time, as I have begun to realize.  I’ve never been able to keep it up without totally running myself into the ground.  Now we are living in a future neither of us pictured.  I have been very focused on making things work, on being solution oriented.  I’ve wanted to continue to make plans for the future and adapt to the changes.  I keep trying to make my life as on track as possible.  Having the wheelchair has been a great adaptation both out and here at home.  I can get to the bathroom and kitchen when I need to now, so I am no longer feeling trapped on the couch.  I still have to walk into the bedrooms due to door size, but I don’t need access there as often (I typically sleep in the living room).  I know it would be easier for everyone if I just let it be- made things work out here where we live now.  Still, having to go a flight of stairs to get from our front door to our living room is turning into this overwhelming obstacle.  We knew that the stairs might be a problem from the start, so there is the rear sliding door that goes out to a common area that does have a cement path (used for water drainage) that goes out to a street near ours- this was plan B.  At the time we moved here, I had a hard time imagining that both the stairs and back way would be so difficult for me.  Only in the deepest recesses of my imagination would I have ever considered that my mobility could decline so.  That being said, I am still very thankful for the mobility I do posses- I am still often able to walk around the house in the first part of the day and sometimes even later.

I think my recent run of extremely good days, days upon days where I could walk, where I didn’t even want to think about wheelchairs, these good days impacted everyone in my life differently.  I wanted to celebrate with my husband that I was back!  That I could not only have better mobility, but that I had lifted from a thick fog of cognitive confusion.  I was finally getting enough blood to my head.  He was hesitant, but as they days went from one, to two, to three, he and I both started to have a greater hope.  Just as I was crushed to have the pendulum come swinging back the other way, I think it hit him hard, too.  Not only that, but his mother also told us about some of her health issues and an upcoming major surgery she had planned.  My husband and I were in the midst of considering an offer on a house and had been making some verbal negotiations.  It was a few days into my crash- it was the night before last, that our realtor let us know the lowest the seller was willing to go.  It sounded fine to me, but not to my husband.  The house was a major fixer upper, so I thought it made sense to get something like that since we already planned to do alterations for a wheelchair.  I thought we were in luck with this house because I believed the neighborhood and architectural style would lend itself towards holding and adding value based on improvements we made (though the wheelchair stuff is clearly not adding value).  My husband thought that it was in too shabby of shape and did not agree that fixing up the house would be worthwhile for the price.  I know- sounds like a classic thing a married couple would disagree on, especially if you ever watch those home buying and home improvement shows on TV.  I also know that all these stressors combined were probably a ticking time bomb- at least I know in hindsight.

I’m fine with disagreeing.  I see at as an opportunity to share and find common ground.  I believe my husband wanted to have a conversation with me to understand my perspective, but it didn’t feel like that.  I have been in abusive relationships in the past.  For better or worse, I do not deal well with anger as expressed by others.  I do especially poorly if I feel like that anger is directed at me.  I just can’t communicate like that.  Sometimes it’s just really unpleasant and I try to calm things, but other times it is too much and I feel triggered.  I feel like I am right back in one of those abusive relationships and I just want to escape.  My husband asked a lot of questions, but there was much anger and hostility in his voice- I felt interrogated.  I mentioned wishing our realtor knew this neighborhood market better to which he snapped- you picked her.  I calmly said that the realty group had assigned her, but that I didn’t understand why he was being so accusatory.  He said how much he hated house shopping, but at the time we shopped, he said that anytime spent with me was enjoyable, even if it was doing house shopping.  He told me he didn’t believe me when I thought we could make improvements to increase the home’s value, but his tone was so aggressive.  I looked at him with shock and asked if he was calling me a liar, to which he said no.  He started saying things like the house was a piece of shit and that he didn’t want to be tied to an albatross.  This language was starting to sound less like house buying and more like I was the piece of shit and an albatross.  I told him to please stop barraging me with questions, that he was freaking me out.  I said the house is not worth this, our marriage is more important.  I then told him I would not answer anymore questions, since he had not stopped.  At this point, he slowed down and gained composure.  He asked what he could do and I asked him to please leave me alone.  He complied and left the room.

This conversation may not have been too dramatic in the grand scheme of things.  He never got so loud so that he was yelling and he never did insult me.  As I tried to process it all, I couldn’t decide if he meant for the insults about the house to have that double meaning towards me, or of it was subconscious, or if it was really just about the house.  Interesting word choices though- they stung as I thought of all the people who I have loved who treated me like a burden.  And as I tried to process the conversation, I did go back into that dark place where all those things ex boyfriends and other loved ones had once said echo and reverberate through my self esteem.  It had been a very long time since I had been there and I was surprised to find myself back there again.  Fortunately, I did not stay in that mental space. I realized that my husband and I were in no place to be making these big decisions at the moment.  We needed to let the house go and work on us.  We’ve barely had a conversation since this all happened.  I said I wanted to do couple counseling and he has agreed.  He sent me a big email about house stuff with links.  Of course, I could have replied and keep pushing for the house, but I just explained that I didn’t want to get back into it until we worked on our communication.  I said that he clearly didn’t want the house and that we need to focus on us before taking these other big steps.  I also explained some of the key things that really upset me and he was apologetic for being angry.  He said he never meant for the insults about the house to have any double meaning towards me.  He worked really late last night and came home looking like someone had just died, just so slouched with hollows under his forlorn eyes.  I tried to talk a bit, but he was distant and quiet.  He stayed up too late and woke up too early today.  I tried to ask how he was doing today and he is still very quiet with such a grim expression.  For all my attempts to understand others, I don’t know how my husband is doing or what is going through his mind.  I see such terrible pain.  I do believe he is under more stress than he can handle and I don’t know what to do about that.

My new goal is to dig deep into my toes and find all the patience I can gather.  I will try to stay here with the dreaded stairs without going to look at other homes, at least through the holidays, preferably through my mother in law’s surgery as well.  My husband has done so much for me.  I am able to take some pressure off of him, so I will try my best to do so.  We also have our first counseling session next week.  And although I’ve mostly focused on my husband, my other family members have made it very clear to me that they think I should stay put for a while and find other solutions besides moving.  While it may feel like everyone disagrees with me, I know they don’t fully understand what I’m going through and they just want the best for everyone.  I should be able to manage here longer and I do know we will find a place in the future.  This is a temporary situation and it will pass.

In the meantime, my crash has been a bad one.  I’m having either a cold or allergies, not really sure at this point.  Physically, I am not moving around much and I’m using the chair for a good part of the day when I do need to move around.  I’ve been dropping the ball on phone calls, messages, and all that stuff, but trying to poke out every other day or so to keep things moving.  Dealing with health lows at the same time as emotional lows can lead to some spiraling, so I am watching for that and doing a lot of proactive (yet sedentary) stuff to keep my spirits up.  Instead of focusing so much on houses, I am thinking about the parts I really love about that- I love the outdoor spaces.

Since I am up here in my tower, I am looking out the windows a lot and I am watching videos of garden tours.  I am loving the garden tour videos so much!  I was watching some on English Cottage gardens- so charming!  I also watched some on California Native gardens and was so excited about how much they can conserve water (versus grass lawns) during our drought, plus how they help with butterfly and bird populations.  I was delighted to see how many elderly people with mobility issues were active gardeners.  It really filled me with hope.  I know this time is going to be hard on me since I feel so trapped and like I can not even find my escape until some time has passed.  I need to focus in on other ways to experience freedom.  This is not the first time I’ve felt trapped like this.  Even back when I was a teenager, my parents were so strict with me and had so many rules that it was hard to leave the house.  I spent hours up in my room writing, meditating, listening to music, and day dreaming out the window.  I’ve had many times to work on my inner patience, to explore and create a rich inner world.  I know how to do this.  This time will allow me to rebuild with my husband, to look into what brought us to such conflict and help us to build tools together to better communicate going forward.  I can reflect on myself, too.  I will consider ways of adapting and addressing my needs, while taking the needs of others into consideration.  I can find more ways to find that balance.  And all the while, I will remember how much I love myself, my husband, and everyone else.  Love is the most powerful thing I have and I have so much of it.



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