Ramblings on healthcare, medical education, and life with a spinal cord injury
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Home, sweet…. home?

As many of you know or have discerned from comments to the last major blog post, I have finally been released from Mount Sinai and am now home.  I was finally discharged on Friday, May 23rd, at the very late hour of 7pm.  Being the day before a holiday weekend, I figured there was no way the ambulette service would be anywhere near on time.  So I planned accordingly, packing my things slowly so I’d be ready for their 4pm scheduled arrival.  3:15pm rolls around, and the driver showed up.  I wasn’t ready!  He said they would send another driver back to pick me up around 4pm.  After numerous calls to dispatch to complain, and being told repeatedly, “within 30-45 minutes,” a different crew finally arrived at 7pm to pick me up.  Aye.  And being at home hasn’t been any more smooth/easy, either…

I’ve been remiss in keeping the blog updated the past two weeks since arriving at home.  One would think that with a lot less full schedule, I would be able to update it every day.  Not so, it seems.  Getting settled at home has proven to be more of a challenge than I had expected.  Make no mistake, I knew prior to being discharged that it would be hard.  I thought a lot about how I would handle being in the world again, sans call button.  The thought frightened me, and although I knew I was ready to make the transition to home, I didn’t have any idea what it would really be like.

You see, I was never one to hit my call button in the hospital.  After I got good at doing my own popovers (bracing my arms and popping over from one surface to another, e.g. from wheelchair to bed), I didn’t even bother to hit the call button to ask for a hospital aide to help me get ready for bed.  I just did it all myself.  What’s the point of hitting the button and waiting who knows how long for them to show when the whole point of my therapy was to do those things for myself?  By the time I left, I was so independent that the aides would come in randomly at times just to make sure I was okay.  I never hit the call button.  So why was I worried about not having one at home?

There is safety and security in knowing that somebody is a button-press away.  Sure, I’d never needed that button in an emergency.  But I knew it was there, and that made me feel safe.  Now there would be no button.  And to top it all off, the home aide service refused to accept my Medicaid-pending status (which Sinai had been happy to accept for payment the past two months) and thus could only provide services that my insurance would cover.  Which meant I had to go from a full-time hospital support staff to four hours per day, five days a week, of in-home aide service.  And no button.  As much as we tried to fight for more hours, it was not to be so.

The ride home from the hospital was nice.  It was a beautiful Friday early evening, and I made the trip sitting up on a gurney, looking out of the back of the ambulance, surrounded by the milieu of bags full of my hospital-worldly possessions.  I felt as though I’d been shoved in the back of a moving van, squeezed tightly between random books and clothes that needed to be laundered.  Still, with the late afternoon sunlight and the promise of a new life of freedom ahead of me, I felt ecstatic.

As I’d mentioned previously, my prior apartment was far from wheelchair-accessible.  It was a garden-level floor-through in a brownstone in Park Slope.  The flight down from street level was approximately fifteen narrow, steep steps, and the hallway and bathroom were just too tight a squeeze.  On the night I was injured, EMS had to call for support from the fire department to get me out of the hallway and through the tight entrance on the spineboard.  So while in the hospital, I looked for a new place to live with the help of my girlfriend.  She made appointments to see a number of places, none of which turned out to be all that great.  But one day, after viewing one of these uninteresting properties, she saw a sign by a very nice building that said “apartments available.”  She went in on a whim, and they had a single one bedroom available in the building.  By the end of the day, based on what she’d told me about it, I was convinced it would be perfect.

A couple weeks later, the lease was signed and the apartment mine.  Thanks to movers and some very close friends of mine, my old apartment was moved to the new one the weekend before I left the hospital.  As I approached in the ambulance, I had no idea what to expect.  The pictures looked great, but more importantly, I’d just spent four months in the hospital and was now going to a new home which I had no connection to.  I hadn’t done the move-in, I hadn’t been in close contact with the building staff, and this new apartment felt like just another place I was going that wasn’t home. But nonetheless, I was excited.

I got upstairs, and my girlfriend had already done a lot to make the apartment feel like home to me.  She had put a tremendous amount of effort into getting the apartment settled in and laid out in a way that I would like.  That was no small feat, since I was in a particularly bad mood on moving day.  Being detached from the day’s events was particularly hard for me.  I’ve always been such an independent person that I couldn’t imagine all of my personal artifacts being sifted through and handled by people I couldn’t see or supervise.

I try to be a type B person, but once in a while the control freak in me comes out.  And it came out in a bad way on moving day, as I snapped at people who didn’t deserve it.  It wasn’t just being out of control that bothered me so much.  It was the fact that it was a reminder of just where I was.  In the hospital, dealing with a spinal cord injury.  Me, the 6′ 4″ guy who always just grabbed heavy furniture and items when helping people move, now had to depend on others to do the things he used to be proud to be able to do.  Me, the guy who was about to start medical school, now had nothing to learn over the next year, but how to walk again.  Me, the guy who has lived his life independently since a very young age, now had become heavily dependent on other people.  That’s a hard pill to swallow.

I’ve always been bad at asking for help.  It’s not so much that I feel as though asking for help is a sign of weakness, it’s more that I feel bad burdening people with things I should be able to do myself.  I always love helping other people and will go out of my way to do it, but I’ll be on the verge of doing some horrible damage to myself before I ask somebody to help lift the other end of something heavy.  Ask somebody to help me with something big like moving or cleaning? Forget about it!  Until now, that is.  I have to ask all kinds of people for help doing things that I never would have asked for help to do.  And everybody has been so gracious in responding to my requests and not even hinting at the fact that I’m asking them to do anything they don’t want to.  Which I could not be more grateful for.

Having to depend on others has been a big part of the transition home for me.  Probably the single biggest.  I never depended on others, but now I have to.  Coupled with the new obstacles that I face day-to-day, just trying to navigate the neighborhood and put together a comprehensive, long-term therapy plan, and I’ve been pretty out of sorts the past few weeks.  The emotional impact of the transition is wearing on me, and although everybody tells me how shockingly well I’m doing, I certainly don’t feel like I am sometimes.  It’s hard to explain to somebody what it’s like to live with a spinal cord injury, day-in, day-out.  I don’t even know what it means, yet.  The hospital was a bubble, a nice, warm, protective bubble that lets you ignore those things (no matter how well they prepare you for it).  Now I’m outside the bubble, and although I don’t want back into it, it’s made me realize just how nicely the bubble supported me.

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