***I Am The Girlfriend...***

WAGSofSCIWAGSofSCI Posts: 354Moderator Moderator
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Hello friends,

We are coming up to 4 years post injury in January. My boyfriend, Dan, sustained a C5-C6 injury while we were out of the country on winter holidays. He had his surgery in Cuba, where we were vacationing, in order to be stable enough to fly back home, which was fine. Once we returned back to Canada, the biggest shock was the difference in medical/ hospital services. In Cuba, the staff were very casual and friendly. Almost to the point that it felt that they did not take the injury seriously, even though I'm sure they did but I was in shock. While also, I was responsible for most of Dan's care. I slept beside him in a chair, would ask/ administer his medications, help perform enemas before surgery and do all of his daily care. When we arrived to Canada, it was very different. He was in quarantine, all visitors had to wear masks, gowns, gloves, and face shields. I was no longer in charge of advocating for him, in fact nobody really cared that I had for the past week been his voice, hands and feet.  

Here is where it all got a little bit tricky. I had been dating Dan for 3.5 years on the day of his accident. I surprised Dan with this trip as he had never left the country, was a hard worker and even though we had talked about taking a little vacation every year, we couldn't afford to pay a mortgage and go away. So, one day I just booked it and we were on our way to explore Cayo Santa Maria, which is located in Cuba, down a 48 km causeway. Basically, it just means that its a bit of a drive to where we were staying, a 48 Km kind of a drive, down broken and bumpy roads. We were intrigued to go to this part of the island which felt remote. However, when Dan was injured, this meant that we would also have to take a 48 Km drive back into a main city, to the closest hospital. The only thing that was stabilizing his neck was my travel neck pillow. I threw a little travel blanket over him as he was shivering from shock and cut an IV tube to stick into a Styrofoam cup to feed him water, his lips were blue. 

Anyway, I guess the reason I am writing this is to ask what sort of advocacy YOU had during your injury? I'm sure it varies across a scale depending where you were injured. But, did you have friends, family or legal aid to fight for your case? Did you ever think that things could/ should have been done different for you? If you could go back, what would you want to be done differently? What advice would you give to someone who is newly injured now?


Thanks for reading as always!

Elena Pauly
WAGS of SCI
Your WAGS of SCI
(Elena and Brooke)

Comments

  • iamdadmaniamdadman Posts: 186Moderator Moderator
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    @WAGSofSCI
    Hello Elena,
    My wife was my very strong advocate throughout my hospital and skilled nursing facility stays.  She is a retired nurse so I was very fortunate to have her be my voice.  We have been together since 1973 and I was injured in 2010 so our relationship is one that has navigated the ups and downs marriage can bring.  I am so very easy going and though I am getting better as being my own advocate, I found it impossible to stand up to the doctors and nurses providing my care.  I have gotten much better at this and most times can self advocate.  
    Pauline, my wife, had no problem challenging or even correcting medical staff (including doctors) when she saw them doing things incorrectly or even in an uncaring way.  She has always been fiercely protective of me and became even more so after my injury.  The first thing she did was read a book, I am sorry I cannot remember the title, all about SCI.  Then she read Christopher Reeve's biography and as a result reached out to the PRC where she got information and assistance.  I have become used to it since we have been together so long but her usual way of speaking can come out sounding harsh.  At times, this was necessary but afterwards she would always talk to the person one-on-one to explain why she reacted the way she did.  
    When I had to go to the skilled nursing facility, they brought another bed into the room and she stayed with me.  In fact, she never left my side for the nearly four months I was hospitalized.  At the skilled nursing facility, she was basically in charge of my care.  She gave me my meds, did my bowel program, kept the staff informed and made sure I was turned and positioned correctly.  Again, what a blessing.
    I don't know what I would have done without her being there.  She had no fear to challenge anyone or anything that she felt was not in my best interests.  I called her my Warrior Woman.  She is an amazing woman; smart, funny, quick witted, caring and so in love with me as I am with her.
    Based on what you have written, you sound much the same as my wife especially considering that the length of your relationship was not nearly as long as ours was.  I commend and admire your commitment to Dan and he is blessed to have you there throughout this difficult transition.

    Joe
  • WAGSofSCIWAGSofSCI Posts: 354Moderator Moderator
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    @iamdadman

    Hi Joe, 

    Thank you so much for sharing your wife's experience from your perspective. You make so many statements here about her spirit that resonates with me, lol. Dan too says that he feels I come across as aggressive and over protective. For example we have been renting in a building that does not have an accessible push button to enter. It has been four years that Dan cannot enter the unite safely or easily at which point my heart aches for him when I find him sitting outside in the rain waiting for someone to let him in. Every time they keep making excuses as to why they cannot change it due to the expense of changing the entire system. I know that it can feel uneasy for Dan when I have to speak up and say things like, "you can talk to my lawyer now because this has bee 4 years of this nonsense and excuses" and he always says "Elena you don't need to do that", but at which point do they take us seriously? 

    I admire your wife for being a strong and powerful voice because she cares so deeply for you and and your rights to live a life you deserve. Bravo to both of  you and your relationship. Thank you for sharing!

    Elena
    Your WAGS of SCI
    (Elena and Brooke)
  • iamdadmaniamdadman Posts: 186Moderator Moderator
    100 Likes 100 Comments 25 Awesomes First Answer
    Hi Elena,
    Doggone, after four years I would have told them to talk to my lawyer as well.  I usually appreciate Pauline's assertiveness and the only time it bothers me is when a doctor may be directing a question at me and Pauline feels that she needs to respond.  Dan should definitely not be sitting out in the rain!  Just be grateful he doesn't live in Washington like we do...lol  with all of the rain we have been getting lately, I would have drowned...
    much love,
    Joe
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