Friday, May 24, 2013

"Hannah, Same Both Ways"

A few weeks ago I made a blog post with my review of the book Overcome: Burned, Blinded and Blessed by Carmen Tarleton. A few days later I got an email from Sam, a marketing manager who works for a publishing company, and he asked me if I would read a book that the company he works for recently published and then write a review of it on my blog. After reading the synopsis of the book I said that I would since it sounded like a book I would enjoy. Sam sent me a copy of the book and my mom read it to me, because I knew that she would like it, too.

The book is a memoir called Hannah, Same Both Ways and is about Hannah Rose, a young woman a few months older than I am who also happens to be paralyzed from the neck down. When Hannah was 15 she developed a pain in her back and went to the hospital to get it checked out. It was a rare condition known as transverse myelitis. Within days Hannah was completely paralyzed from the neck down. This is a quote from her book:

"I pulled my jeans out of the wardrobe and my GAP hoodie. I did my hair for the umpteenth time and took one last look in the mirror before heading back downstairs. Little was I to know, but that would be the last time that I would be able to walk down a flight of stairs. I have never seen that bedroom again." 

Wow, that sounds really familiar! I can say the exact same thing for the morning of November 17, 2003––my last morning as an able-bodied person.
I enjoyed this book for many reasons, but especially since Hannah's life parallels mine in so many ways. Needless to say, I could relate to many of the experiences Hannah shared in the book. I made a list of some of the things that I really identified with, as well as some of my personal thoughts (which are in red so they're easier to distinguish):

  • Learning how to communicate with others when Hannah couldn't speak, and learning how to speak again after undergoing a tracheotomy.
  • Having her hospital room decked out and decorated with mementos to help her feel loved and supported.
  • Having a steady stream of visits from friends, and having supportive family members never leave her side.
  • Coming to terms with having to be dressed, bathed, fed, toileted and more.
  • Becoming friends with the nurses that cared for her in the hospital.
  • Missing out on the fun things that her friends were doing (like going on a school trip to France). I felt the same way when my friends went to go see The Lord of the Rings: The Return of the King a few weeks after my accident. I was still recovering in the ICU, so there was no way I could go. This was a painful representation of the long list of things I would never be able to do again.
  • Sitting in one of the hospital recliners. This might not sound like much of a milestone, but I remember how scary/uncomfortable getting out of bed for the first few times after becoming paralyzed was, and I looked at it as quite an accomplishment. 
  • Getting to the point where you're no longer considered "ill" and coming to terms with the fact that your old life is over and your "new" life is just beginning. This adjustment is a steep learning curve that has its definite ups and downs.
  • Missing the small, simple things in life. How well I know what it's like to just be a spectator of life instead of an active participant since there are so many things I physically can't do that most people can. Sometimes it's really difficult to have to sit back and witness everyone around you having the things/doing the things you wish you could.
  • Having to plan out your life with precision and accuracy. Paralysis pretty much kills any chance for spontaneity and it's hard to do anything on a whim, which is sad because sometimes flying by the seat of your pants can be pretty fun.
  • Having difficulties with kidney stones/bladder stones. The renal system of a paralyzed individual is compromised and you are prone to having stones form since you aren't ambulatory and your kidneys/bladder don't drain as efficiently. The urine tends to pool in your kidneys and starts to crystallize, causing stones to form.
  • Hannah's desire to have a romantic relationship/her own family. I can relate to the feelings of longing for love and wishing/hoping that someone will come along that will be able to look past my physical limitations and be able to accept me for ME. This is such a natural desire that I think most people can identify with, whether they are disabled or not. 

I want to include two excerpts from the book that really resonated with me. Here's the first: 

"How I look is still as important to me today as it was before I became ill, but keeping control over such a basic female need has proved difficult. I remember one day when Mum was trying to do my hair and I just burst into tears through sheer frustration. I was desperate for a mirror, a brush and two ‘working’ hands so that I could tackle it just as I wanted it done. It is one thing not being able to walk but not being able to make myself look good is really very hard to take. I’d love to be able to run my brush through my hair and put my makeup on instead of having to sit motionless and helpless while others do it for me." 

After my accident one of the most difficult things I dealt with was feeling "ugly" and wondering if I would ever feel pretty again. This was a low blow for me. I was 19 years old and I liked looking pretty, so feeling anything but was really hard on me.

In the early days after my accident I remember how frustrating it was trying to teach my mom the ins/outs of the hair and makeup routine I'd perfected as an able-bodied person. What had become second nature to me seemed foreign to my mom. Even the most descriptive words and phrases couldn't seem to convey the how, where and what I wanted in an easy to understand way. Truly, words only go so far when you're trying to teach someone a practical skill like that. There's really something to be said for physically showing someone the technique you've become accustomed to.

and the second excerpt: 

"I don’t even care if people stare at me now. I just smile back at them. When I first became ill I said to Dad, ‘I’m never going to shop in Northwich or eat in a restaurant. There’s no way that I will go out anywhere.’ … 'No one in Hartford, Northwich or anywhere is going to see me looking like this.’"

I could really relate with this, because I felt the exact same way after my accident. I solemnly vowed that I would never do certain thing again, like going to Walmart, the mall or the movie theater. I was content to stay in the safety of my own home. Home, the place where I still felt normal and was able to do my own thing without having to worry about getting stared at. 

As time went by after my accident I became more comfortable with my new identity as a disabled person, and I ended up eating my words about all of the things I vowed to never do again. (Now I know why "never say never" is such a popular phrase!) I no longer mind going out in public, and I actually look forward to it. I love shopping and movies too much to let my fear of looking different restrict me from things I really enjoyed. I know I probably get a lot of stares and curious glances when I'm out, but that's okay. If things were the other way around, I'm sure I'd shoot some curious glances of my own if I saw someone like me out and about, too. (But in a more tactful way, of course!)

Language: Hannah lives in England, so another thing I found interesting were all of the British terms/expressions that she used. I didn't understand all of the British lingo, but here are a few examples… She talked about "going to hospital" whereas we Americans say "going to the hospital." I'm not sure why British people omit "the" from the expression (or why Americans have added "the" but it's an interesting difference).

Another term I found interesting is "poorly." (Hannah is poorly today.) My mom's friend Linda lives in England and my mom said that she's heard Linda talk about her husband being poorly. It's interesting  how British people say "poorly" and Americans say "feeling poorly."

Hannah also talked about her "carers," the term she used for what Americans refer to as "caregivers." The differences in language/expressions are very interesting.)

Differences: I've mentioned many of the ways I relate to Hannah, but there are some ways that we differ, too. Hannah went to "University" and got a degree, and she now has a job working with the police. I think it's wonderful for her that she went to college and got a job, but college/work definitely don't interest me. I know that if I went to college or have a job I wouldn't have time to spend doing the things I enjoy, like using my computer to work on projects.

Hannah also wrote about her social life and how she enjoys going out to clubs with her friends. She said how one time she was so drunk she couldn't even drive her power wheelchair. I still enjoy having a social life, too, but going to clubs and drinking definitely doesn't interest me. I have to admit I was kind of shocked that Hannah would drink to the excess that she was too impaired to drive her wheelchair, or that her friends/carers would assist her in getting intoxicated. It seemed irresponsible to me, but I know people have different ideas about such things.

I found it interesting that Hannah didn't really mention God or her spirituality. My belief in God is so much a part of my life that I can't help but talk about my faith in God and how it impacts and affects every aspect of my life.

Hannah seems to have more medical problems/complications than I do. She's been in and out of the hospital a lot over the years. In the book she mentioned suffering from autonomic dysreflexia a few times (a potentially life-threatening condition common to quadriplegics), and she also talked about the serious problems she's experienced with pressure sores. Sometimes her pressure sores have been bad enough that she's even hospitalized. She said that she once had a sore that was so severe that maggots were used to try to help heal the wound. Yes, maggots! As gross as it sounds, they're actually efficient consumers of dead tissue, while at the same time leaving healthy tissue alone.

I've had my fair share of kidney stones, but for the most part I'm remarkably healthy for someone in my situation. I've never experienced dysreflexia, and I've never had a pressure sore (which I think is unusual for someone that's been paralyzed for nearly 10 years).

Health Care: One of the things I thought about while reading the book was how Hannah's situation might be different if she lived in America. From some of the experiences she shared in the book it seemed like she received sub-standard care at times. I thought it was odd how Hannah said that it was several months before she got out of bed and sat in one of the hospital's recliners. The hospital staff encouraged me to get up in a recliner right away (within the first few weeks after my accident) telling me it would be good for my lungs and skin to sit up straighter and shift my weight around.

One of the times Hannah was sick and admitted to the hospital she said that the nurses were marveling over her ventilator, asking her how it worked. You'd think that anyone who worked in a hospital would be familiar with what a vent was and how it worked.

I wonder if Hannah would benefit from getting a diaphragm pacer. I know she doesn't depend on a ventilator 24/7 and mainly only uses her vent at night, but I just know how much I've benefited from getting my pacer. I went from being on a ventilator 24/7, to now no longer requiring the ventilator at all. I still can't breathe on my own, but using a diaphragm pacer to breathe for me is a lot healthier than using a ventilator.

One thing that Hannah has that I think is superior to what the healthcare system in the US has to offer (at least in the state I live in) is round-the-clock caregivers. Even though I have great insurance, the most help I qualify for is six hours of paid care a day, seven days a week. This is really pitiful and doesn't come close to cutting it since I need someone with me all the time, but I try not to complain too much and am just grateful for what I am allowed.

Conclusion: I really enjoyed reading Hannah's book since there was so much I could relate to. This book would be enjoyable for anyone to read, but especially for those who are affected by paralysis (or other diseases/conditions that have physical effects on the body), as well as the family/friends of people with disabilities. I always think it's interesting to read about people with challenging lives to see what they've gone through, how they've coped and what they've learned along the way.


Lisa said...

Loved reading about the comparisons!

Julie said...

I'm gonna see if I can borrow this book in my library, it sounds really good.

I found it really interesting about the different words that we use, like "hospital" instead of "the" hospital & "poorly" etc. I bet you'll be using some of our words now - like brill:)

I know I've said it before, but you are a real inspiration to me. When I'm sometimes have a bad day I think of you & realise that my problems are nothing.

Cheerio from the UK.

Matthew Smith said...

Hi there. I live in the UK and most of us are quite proud of our healthcare system, it's free for everyone and although probably it isn't as good as the best money can buy in the USA (which not everyone can access), it's pretty comprehensive. We have some quite well regarded rehab units, both for brain injuries and spinal cord injuries - Stoke Mandeville is quite famous as where the Paralympics originated (as the woman who wrote that book lived in north Wales, it's unlikely she went there, though).

Over here the majority of people with very severe disabilities (or even less severe ones) don't work - the unemployment rate is huge, simply because most workplaces aren't accessible or companies refuse to accommodate people. Having a job and being self-sufficient is a mark of pride for some people, even if they need a lot of help. Then again, for some people the social security system makes it not worth it to work unless you earn a huge amount - all your wages will be eaten up in paying for care costs because the state will only fund care for people who have no income.

As for the diaphragm pacer, you can only have one if you're totally vent-dependent, so she would not be able to use one.

Heather (Paralyzed with JOY!) said...

Matt, it's actually not true that you have to be completely vent-dependent to benefit from a diaphragm pacer. I don't know how getting the diaphragm pacer would affect everyone, but in the case of Hannah, she could be off of the vent and breathe by herself during the day, and then turn on the diaphragm pacer to breathe for her at night, instead of being hooked up to the ventilator. As someone who has spent years on both a ventilator and a diaphragm pacer, I can say from personal experience that the diaphragm pacer is far superior to a ventilator in so many ways and for so many reasons.

Andy Walker said...

Great story about Hannah Rose. I really fancy reading the book, I'm inspired by her social antics, how she has the confidence & intelligence to make her own life choices. She's very brave & I commend & respect her PA's for supporting her life choices! Go Hannah, Go Team God you sound like fun, God will be well pleased you're leading a full life & inspiring others! Yey xx Thanks Heather, great blog!

I'm also paralysed C5 & you've inspired me to socialise more & drink myself happy :) x

Sarah Walker said...

Hi Heather, I'm glad that Hannah's book is being promoted across the world and found your post very interesting. I am the Sarah mentioned in Hannah's book and I am a very close friend of hers. I am interested about what projects you get up to on your computer, I guess the reason a few people have expressed concern about how you refer to work as 'definitely not interesting you' is because you say you wouldn't have time for the things you enjoy. I assure you that Hannah absolutely loves her job and all of the friends that she has made in the work place. It is a fact of life for most people that we balance work with play but she is lucky to have found a role where she can use and develop her skills and also gain great satisfaction knowing that she has worked hard and earned money for herself.
I'm sorry you feel that we are irresponsible enabling Hannah to make the same choices as us when we are in a bar/club. I guess this is more about personal and cultural differences as Hannah whether she happened to be in her wheelchair or not would have wanted to be going on nights out in this way. I don't think I would be a true friend to her if I thought that this experience shouldn't be available to her because of her circumstances.
It saddens me to think that people in America are dependent on 'great' insurance that only entitles you to 6 hours care a day when you obviously require 24 hour support. What happens to people from lower income families without insurance? What happens with you for the other 18 hours a day? I guess that you are reliant on support from your family? What would happen if there was no-one to provide this support?
As you will have read in the book, both of my brothers have high level support needs, as a family we provide a lot of this ourselves because we are passionate that their support is delivered in a positive and enabling way. We struggle to employ and retain high quality staff, however the idea that my brothers would be entirely dependent on family with no opportunity to employ staff (if we could find them) if we happened to live in the US is really shocking to me.
I look forward to reading more of your blog in the future and perhaps we could chat together with Hannah at some point,
Sarah :)

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