Monday, March 28, 2011

Planning Ahead, Because You Never Know.

I've been doing a lot of research lately, and thinking about my wishes, in the event I get sick, and/or die. I realize this subject matter seems morbid, especially among my peers (people in their late 20's, early 30's), but after everything I've been through, I know how important it is to consider these types of things, and put your wishes down in writing. Reality is, life is unpredictable and it doesn't matter how young, or healthy you are, for life to take a drastic change. Spinal cord injuries, diseases (like MS, Parkinson's, ALS & Guillain-Barre), traumatic brain injuries, or tumors are all examples of things that can hit a person off guard, and severely change a person's life, practically overnight. I think once a person turns eighteen, everyone should seriously consider creating a living will.

Shortly after my accident (I was twenty-four), I needed help, to take care of all of my financial responsibilities, notifying my employer (I had a few weeks left of teaching, before summer break, and had lined up a bar tending job for the summer, which I was supposed to begin that following Tuesday), canceling a cosmetic procedure I had scheduled for the end of that month, breaking my lease, packing up my things, selling my car and closing down my apartment. Obviously, since I was an adult and unmarried at the time, I had to authorize someone to make decisions for me, and give them permission to handle all of my affairs. I chose to give power of attorney to my parents (dad & stepmom). They made a lot of choices, and did a lot of things that I was unpleased with. At the time, I was in no state to be fighting, was terrified, and in shock. My whole life that I had built, up until that point, came crumbling down, at lighting speed. It sent shockwaves through my entire family, and the burden of it all created a tremendous amount of stress, and grief for everyone involved. It created a ton of tension (putting it mildly) between my parents, myself, my boyfriend and my mother and my stepdad's family. Many horrible words were said, and tears were shed. To this day, it has created a wedge between me, and certain members of my family.

Although I'll never agree with many of the things my parents said and did, I do recognize that they were under an insane amount of pressure and put in an extremely awkward position, by having my life, literally dumped into their hands overnight. They had to process losing the daughter they always knew, and the realization that all my dreams would be shattered forever. They knew, as did I, that they were the only ones in the position to take care of everything that needed to be done, on top of maintaining the responsibilities of their own lives (house, jobs, bills, etc.). It was a horrible situation, for everyone involved. Looking back, I wish I would've thought about my wishes, quality of life, and have put those wishes in writing. My parents never asked for the burdens my accident created, and I never want to go through the heart ache and misery that I went through. They handled my affairs much differently than I would have, and it caused me a lot of additional suffering. That said, I think they did they best they could, at the time. Everyone deals with trauma differently, and I try to always remind myself that I backed them into a corner. Someone had to take care of it all, and as an adult, I couldn't just give POA to everyone close to me. They were my closest next of kin, that was capable of doing any of the big issues, that needed to get done. I never want to have to place that type of burden, on ANYONE, ever again. My life is my "mess."

I also don't ever want to be in the vulnerable position of having to have other people make decisions that greatly impact my life. I don't want to place the burden of making those heavy decisions on my loved ones, and put them in the position of guilt, or blame, because they do something wrong, or go against my wishes. I also don't want my loved ones to be in the dark, or possibly pitted against one another (which did happen) because they don't know what my wishes are, and have to guess, or wing it. If I had seriously thought about worst case scenarios, and had had a living will, and an emergency plan put in place, I could've avoided myself & my family A TON of heartache and drama. As for me, I could've spared myself the hell that living with paralysis has been. I could've died, back then, when I was still in ICU, running ridiculously high fevers, and hooked up to life support. Death would've been very easy then.

I clung onto life, the first year or so after my accident, out of fear, shame and ignorance. I was terrified by the thought of death, because I hadn't accepted the notion of my life never going back, to the way it was. I had false hope, and denial over the realities of my situation. I was also (still am) ashamed at my mistake, and how stupidly I'd destroyed my life, and ruined everything I had worked so hard to build. I think I was in a numb state, of grief and denial. Hope of a cure and belief in the power of my will helped me make it through the hospital and nursing home. Reality has set in for me, and this life is not a life I would've chosen, if I had TRULY believed what the doctors had told me. I just wanted so badly to fix my mistake, and make everything better again. I really thought if I tried hard enough, I could beat the odds, and be a miracle. In that respect, I've been a complete failure, to myself, and have never felt as though I have redeemed myself for all that my mistake took from me, and all the pain I put my loved ones through.

I've made many conscious efforts since then, to take control back over as much responsibility as I possibly can, and make arrangements so that the next time I go knocking at death's door, my family will have the least amount of burden possible, and I have the peace of mind, in knowing MY wishes will be carried out. There are people in my shoes (and worse) that find satisfaction with their lives, as quadriplegics. I don't. To each his own. Personally, I don't feel this is a quality life. There are certain measures, or extremes that I'm not willing to endure to sustain the life (not on top of my already difficult situation), like having a tracheotomy, or colostomy. I refuse to live that way, and have laid out the dos and don'ts, for when I can no longer speak for myself. I have a living will (which I think every adult should have), so none of my loved ones will ever have to guess, or stress, over making decisions that effect my quality of life. I have a last will & testament, so I know, the right people will get what I want them to get. There won't be any room for fighting, or debating, because I've laid everything out, regrinding my possessions, and what I want to happen with my remains.

We don't currently have a program in NJ, but several states have initiated POLST (Physician Orders for Life Sustaining Treatments) programs, where patients can work in conjunction with their physician, to create a plan of action, or non action, based on the patient's wishes. They can serve in conjunction with a living will, and clearly spell out issues like, feeding tubes, IV hydration, pain medications, and other life sustaining machinery and treatments. I think it's worthwhile for everyone to take the time to consider these types of issues, for themselves, and put them in writing. Living wills, and last will & testaments are easy to create, and relatively inexpensive. It is well worth the ten, or twenty minutes it takes to fill one out. You never know when you might need one, and it's better for you (and for the sake of your loved ones) to have one put in place in the event something happens, and you can't speak for yourself. It's also important to be able to discuss your wishes openly, with your loved ones and doctors. You should make sure you know your rights and simple documents, like living wills, POLSTs and last wills, can ensure your rights are protects, and your wishes are carried out. Food for thought.

Info on POLSTs-

- Posted using BlogPress from my iPad


  1. I agree completely that everyone should get some form of documentation of their wishes. I got a POA and Living Will when my pregnancy got more complicated and the chances of emergency c-section were increased. As well as the possibility of Adam being gone during it. The POA was good until after she was born but I still have my Living Will.

    I also spoke to my doctor about my wishes about hysterectomy in case of bleeding as well as what to do if it was a choice between me or kaylin. I knew giving birth normally ends really well but could go terribly wrong. I'm glad I had it all worked out just in case. It gave me peace of mind during the procedure. I'm also glad I have this type of stuff because now having a daughter I really need to make sure my wishes are carried out. Luckily with the living will and Adam knowing everything I want, I know things will be done right.

    I don't think it's morbid to talk/think about this or get it done. It's necessary and smart to be prepared for anything in life.

  2. Hi Chrissy,
    One of my fellow disabled friends on Facebook sent me a link to your blog, so I've read several of your posts over the past few days. First of all, I'll start by introducing myself. My name is Heather, I'm 26 and I was paralyzed in a car accident in 2003 when I was 19. I'm a C2 quadriplegic and I have enjoyed reading your blog and finding out what your life is like as a disabled person.

    I wish I had more advice to offer when it comes to the dysreflexia you experience. I've actually never experienced it, but I know a lot about it from what I learned in rehab. It seems like you have so many things that cause you pain and physical discomfort, and I'm sorry! I know how awful it is to be in pain and not be able to do anything about it!

    My injury was incomplete, and I have sensation from head to toe. This isn't very common, even for people with incomplete injuries, but I'm very grateful that I can feel, even though a lot of the sensations I feel are painful. I have a lot of neuropathic pain in my bottom, hands, lower legs and feet. Sometimes the pain is so intense that it's hard to focus on anything else. I know YOU KNOW what I'm talking about!

    I appreciate how honest you are in your blog posts. I can relate to so many of the physical and emotional things you touch on in your blog. I also feel very much like a burden to my family (especially my mom) at times.

    My heart absolutely breaks for you when I read about your internal conflict of wanting to die, but not being sure what will happen to your soul and not knowing if there is a God, etc. I want you to know that there most definitely is a God. You are one of His children, and He loves you. You're probably thinking, "If that's true, then why has he forsaken and forgotten me?" A lot of times it's not clear why God allows bad things to happen to his people, but there's always a reason.

    I write a blog called Paralyzed with Joy (, so check it out if you like, and/or e-mail me at

    Take care!
    – Heather

  3. I completely agree about needing a Living Will. If my mom had had one, my dad and I would have been saved a tremendous amount of stress and heartache. Instead of knowing for sure what she would have wanted, we had to struggle to remember bits and pieces of conversations and wonder how those applied to the current situation. It was awful. I'm going to get all of my affairs in order so that should anything ever happen to me, Edwin and/or my dad won't have to go through that again.