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    Home--sort of

    I logged on this morning and read all the good wishes in my "I am going home" thread from earlier this week. I don't really know what to say except "thank you." It has been a very difficult week full of all types of upheaval. The messages meant a lot and were very much appreciated

    A quick update: I am home. Kind of. I left rehab and flew back in the city I live in. It was a very difficult flight that tested everybody's nerves and patience. But I made it back in one piece and that is the important thing. For now I am splitting my time between a different hospital and my apartment, spending longer periods at home each day. I haven't slept at my own place yet, but we are working up to that. So the "dragging out" of this continues. But at least things are moving forward now and a gradual transition is proving to be good for everybody involved.

    As for how the first few days have gone, I must admit that it has not been easy. I am very happy to be around my family and friends again (and my pets!). And I think a lot of stress has been taken off my parents and partner, and probably the rest of my family too, now that I am back home again. But as for my own stress levels, I think they are spiking off the chart.

    I am very lucky in terms of living arrangements. I landed an apartment in an adapted building that will suit my needs for now. I was a little unsure of how things would be set up. But it looks just like a regular building. There are regular apartments beside the adapted ones. So it's not a case that the building stands out or anything, which made me feel a little bit better about living there. I am looking to build a house of my own next year, but this is a good place for me for the time being.

    I guess most of my conflicted emotions are coming from the fact that I now have to face some hard facts that I was able to avoid or at least not deal with completely when I was in rehab. Things like training and dealing with my own nursing staff and making sure that all my medical supplies and equipment are in order. And also with the fact that I can no longer use "rehab rules" as an excuse to avoid going out into the world. I am still going to be doing some out patient rehab and I am getting a lot of help with making the transition home. But it's a lot and it's very overwhelming. Perhaps the most overwhelmed I have been since the period immediately after my injury. Actually I think more overwhelmed even than that time, because then I didn't really have to deal with things. I could just pretend it was all a bad dream. I can't really do that now. And I don't think I want to. As tough as it has been, I do want to get some semblance of a life back.

    The thing that most bothered me, though, was coming to the realization that coming home does not equal freedom or independence from the hospital routine. It does in many ways. But having to deal with the fact that living in this apartment means twenty four hour nursing care has left me feeling like I am just trading one institution for another. That is not new--I have known this was coming for a very long time. But it's a tough pill to swallow when you come into "your" apartment for the first time and there are nurses there and you know they are not leaving. That is just something that I need to learn to live and deal with. I am not complaining because I realize how lucky I am and how much better my living options are than many others with this type of injury. Just like everything else, I need time to adjust.

    I know I have used this phrase before, but I am feeling a little stunned by everything right now. I am not dealing with a lot of new issues coming home. Many of the things I am struggling with are things I have to deal with in rehab, at least in a related fashion. Coming home adds a new wrinkle and puts more of the responsibility on me. But the main issues and problems are very much the same, just a little different. And I have spent the last year supposedly learning how to "cope." But I don't know, I am not sure what to feel or think about it all.

    I sort of went into panic and self-analysis overload about a month before I was due to come home. Intellectually, I knew what was coming--even if I couldn't really picture or understand it. But you know, there was still a tiny part of me that thought "this can't be real--I will go home and things will magically change back to normal." And even though I knew that was totally irrational thinking, I think I was still somewhere inside of me holding onto that. So when I rolled into that apartment and all my stuff from my life I haven't seen for a year was there, it was like an anti-climatic moment. And then it just hit me like a ton of bricks: "this is your life now." It was a really horrible feeling.

    I guess I will end by saying I was under the mistaken notion that coming home would mean some sense of certainty that I did not have in the hospital. However, I am feeling more uncertain than ever. I know that this is going to take time—maybe a very long time—I just need to figure out a way to “hang in there,” so to say.

    Last edited by orangejello; 10 Dec 2006, 1:59 PM.

    Thanks for posting, OJ, I was wondering how things were going.

    I hear from most of my clients that the first 3 months home is the most difficult period in the entire time of their injury. You are away from the environment that is adapted to you, with staff that understands your injury and knows just what to do. You make all the decisions for yourself without the protective coccoon of the hospital routine and rules. Getting into a daily routine and finding and training competent care-givers is an additional strain.

    Give yourself time. If you keep at it, with the focus of living life in the community and on your own as the goal, and make yourself get out of your apt. for more than just medical/therapy visits, it will gradually get better, and you will not have to make your care needs the whole focus of your life anymore. Make plans with friends to go to a concert or play....and follow through. Go out for dinner or a Christmas pagent with family...and follow through. Don't wimp out (I know that is not you anyway).

    The holidays only make this a more difficult time, but you have made that important transition. Flying with a vent right off the bat is a major accomplishment!!! Give yourself some credit.

    Use our forums to get some support, as well as ideas from those who have been there about how to get yourself organized and back into the mainstream. Keep us part of your life.

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.



      I am so glad that you posted , and if you ask me, you are dealing better than some might. Just the fact that you realize that it's going to be a long road shows that you are probably already ahead of your game. In time, many things will become more comfortable. You're gonna be just fine.

      If there is light
      it will find

      --Charles Bukowski


        I say it's time for a 'welcome home' party ... that'll put some issues on the back burner ... make way for new problems ... planning a party!!!

        Glad you're into your own apartment. Better start planning for that house now ... it takes a lot of planning, thinking, shopping and costing out.

        I'm glad you posted and look forward to more!
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12


          OJ, glad you made it home safely. Hopefully it won't take too long to adjust to everything, but in the time being, I think you will be just fine. Of course I have no idea what you are going thru but I do know that you are a tough kiddo. You have a great support team with you and that is a huge part of moving forward. Keep posting and good luck to you.

          Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

          If you ain't laughing, you ain't living, baby. Carlos Mencia


            My homecoming was simpler than yours. Back to my house (albeit first floor only), my family, skilled help only once a day and that was just at first. I'd done weekends/day trips home during rehab too. Nonetheless it was terrifying.

            Getting a year's rehab must be both a blessing and a curse. I don't think it would happen in the US because of the cost. They kick us out quick. You no doubt needed that time to learn the complexities of your sci, how to keep yourself alive when all the mechanisms have shut off. The downside is a year is way more than enough time to get mentally "institutionalized". You'll have to keep fighting that. You've done a noble job of it already, I have no fears you'll overcome the agorophobia. (Don't know what else to call it; it's a feeling I know pretty well myself.)

            Cut yourself some slack. Dot the i's, cross the t's, things will all fall into place. Because for things to not is unthinkable.
            Does This Wheelchair Make My Ass Look Fat?


              I'm so glad you posted and made it home safely. Super glad you got to see everyone, espeically your pets. No doubt they can make you feel better no matter what is going on - they won't ask you a million questions about it.

              You are a very strong and passionate woman and I have no doubt in time things will start turning around. It doesn't happen over night, but it does get better.

              I like Lynnifer's idea of a "coming home party" at your new apartment. Get your friends, family, etc together and party that you are HOME in the city that you love.

              Welcome Home Amanda!!!
              "Dream as if you'll live forever, live as if you'll die today." ~ James Dean



                Amanda, none of us have all the answers. We all handle the getting on at different paces. I can see at least you are accepting it as you go , take it one day at a time. Realizing your responsibilities as you go is showing your maturity in the situation. I think you are doing well. Failure is allowed so don't be too hard on your self if the odd doubt creeps in there. I know you will overcome. Bless you.....


                  If I could have 24-hour care, I would jump on it ASAP. I would make it worthwhile for me and the caretakers.


                    OJ--I could so relate to almost everything you wrote. Just remember--every "first" is very difficult and emotional. Strangely enough, because I'm no domestic goddess, but one of my most difficult "firsts" was seeing someone else working in "my" kitchen knowing I could no longer do the things I used to. I learned to, instead, greatly appreciate not having to do kitchen clean up.

                    Hang in there--things will get easier.

                    Cyber hug,

                    Please submit your photo and story of hope:




                      Hey Amanda. I'm glad you made it home safe. The feelings you've just explained are feelings that I too felt when arriving back home. Quite the shock, isn't it? But I know you will do well. Keep the spirits up.


                        OJ -
                        Thanks for your thoughtful, insightful and open essay on coming to your own home. Things may sometimes feel like you are drinking through a firehose, but it sounds like you are doing well.
                        You said "this is your life now." Well, yes, and no. There are some new constraints (OK, a lot of them), but you still have the ability to mold your own life. It's good that you are aware of where the responsibility has now shifted; in the long run that will make things easier & better.
                        A party is a great idea!!
                        Best wishes,
                        - Richard


                          Thanks everybody I was very glad to read the replies and to realize that others had these exact same feelings. I have been wondering if perhaps I wasn't as happy as I should be going home. I mean, I am very happy. It is a relief to finally have a place I can call my own again. But that happiness has been tinged with feelings of fear, doubt, and confusion.

                          A party lol. That would be a good idea. Especially since I found out yesterday the apartment complex has a "party room", complete with a bar, that is isolated from the apartments and can be rented out. I was so impressed! I have planned exactly one party in my life--and came within a whisker of being sent away to an all girl's boarding school in the middle of nowhere. (Seriously, ten years on you would think my parents would forget/forgive about the "slight" trashing their house took--they haven’t ). Planning something like that could work as a distraction, plus help me reconnect with everybody.

                          Day five and things are up and down. I am getting a little more comfortable with the idea that this apartment is my home. I guess I am still in that disorganized state that comes with any move. My brothers and my dad did a great job of moving everything for me. But my apartment still has that sterile, unlived-in-yet feel to it. And the number of still unpacked boxes makes me wonder how I possible had all this stuff in my other place. I thought I had downsized before my last move, but apparently not. My rampant materialism appalls me. For the time being, all the unopened boxes have been relegated to the spare bedroom where they can happily be "out of sight and out of mind." My sister is coming over to do some painting and stenciling on the walls. So hopefully the place will start to take on a more "home-like" feeling.

                          The physical lay out of the apartment is great. It is huge and as barrier free as possible. Despite this, over the past four days I have managed to put a bewildering number of scratches, gouges, and holes in the wall with my chair. Still working on the whole "getting around gracefully" thing. Sigh. But there are a lot of things here that will maximize my independence--almost everything can be run from an environmental control unit. I had a certain degree of this in rehab, but this set up has far exceeded my expectations. So that gives me a reason to feel a bit hopeful that I am not going to be as helpless and dependent as I once thought. There are still some bugs to work out in terms of getting things set up as well as they might be, but that will come with trial and error. So I guess all I can say is that things are "coming along." I am still having a hard time taking everything in and part of me just wants to retreat as far away from the world as I can. But there are small signs of hope as well.

                          Originally posted by betheny
                          Getting a year's rehab must be both a blessing and a curse. I don't think it would happen in the
                          Originally posted by betheny
                          US because of the cost. They kick us out quick. You no doubt needed that time to learn the complexities of your sci, how to keep yourself alive when all the mechanisms have shut off. The downside is a year is way more than enough time to get mentally "institutionalized". You'll have to keep fighting that. You've done a noble job of it already, I have no fears you'll overcome the agorophobia. (Don't know what else to call it; it's a feeling I know pretty well myself.)

                          Cut yourself some slack. Dot the i's, cross the t's, things will all f
                          all into place. Because for things to not is unthinkable.
                          I have been in different hospitals for a year. But I guess it's not entirely correct that all of it was rehab. I spent three months in ICU. Then I more or less languished on a general rehab unit for five months. I had some rehab but not a lot because the main focus was on trying to get me and keep me medically stable. Plus as wonderful as the staff was, they didn't have a lot of experience with my type of injury. So I didn't progress as quickly as I might have. I really didn't start much hard core rehab until I went to a more specialized program that focused on high level injuries. But yes, thank god for the public health care system in Canada. Should I ever go back to work, I will never again grumble about how much of my pay is eaten up with taxes. Thanks to the "need to plan for the future" that my father drilled into us since childhood, I had very good private insurance coverage as well. I shudder to think where I would be otherwise. But, yes, as you say betheny a year inside hospitals has put me in a sort of institutionalized mindset that is causing me some issues in dealing with the "real world" again. It's a tough thing to break out of.

                          I am trying to cut myself some slack, yes. As you say, things will fall into place. I have to believe that and get myself into that mode of thinking, despite my doubts and fears.
                          Last edited by orangejello; 11 Dec 2006, 6:04 PM.