Eyes Wide Open

A Perspective From Within

HOMEland Insecurity


I have been out of the hospital since September 1st 2012. Adjusting to life on the outside wasn’t easy at the beginning. I can understand why it can be difficult for inmates to adjust to life out of prison. At least while I was in rehab I was with people who were just as screwed as I was. Some even more screwed. At any rate, it was the “misery loves company” scenario. There was also a sense of safety and security by having a doctor or nurse just a call button away from me, despite the fact that the call button didn’t work half the time. Even though I was told that I was medically stable to leave, I knew for sure that I wasn’t mentally stable. I still was terrified that my blood pressure would drop to near death levels or suddenly spike leading me to stroke out or that my heart would just mysteriously stop beating forcing me into cardiac arrest. By the way, I am aware that I am a bit OCD, but these fears that I had didn’t just manifest themselves on their own. There is a syndrome called autonomic dysreflexia (AD) that affects people with spinal cord injuries above the midthoracic level in the spine. My injury was at the cervical level which puts me in that risk group. Lucky me. AD causes huge spikes in blood pressure and may be life-threatening. If it isn’t treated promptly it can cause a stroke or heart attack. Watching for AD signs and symptoms was repeatedly pounded into my head the entire time that I was in the hospital. The crazy and confusing thing with AD is that the symptoms are so general and the causes could be just about anything. What a wonderful syndrome to have for someone who can become instantly symptomatic just by reading WebMD.

The common symptoms of AD are:
-Goose bumps
-Heavy sweating around the neck
-Sudden pounding headache

To make the symptoms even more vague, sometimes people will just get a sudden sense or feeling that something is terribly wrong. Hmm, based on that, I should chronically be in AD since I had that feeling the majority of my tour of duty at Jackson.

AD is caused by an abnormal stimuli in the paralyzed region of the body. Full bladder, impacted bowel, or a skin irritation are the most common stimulants or even something simple as an ingrown toenail or a shoe that is too tight. Finding the cause of AD and fixing the problem quickly is very important. I have had bouts of AD when I left the hospital and let me tell you, it’s not fun, especially when there is not a doctor around. You feel like you are going to die. I have learned to be extremely cognizant of the signs and symptoms of AD. I am beginning to think that spinal cord injuries can cause everything but cancer. If you google risk factors with SCI, just about everything that you never want to get is listed as a risk. I used to be worried about Alzheimer’s, but who cares at this point.

Despite all of the medical crap that weighed heavily on my mind, I counted the days to my release from the four walls that surrounded me for three months. I thought that life out of this “One Flew Over the Cuckoo’s Nest” looking hospital wing would definitely be the prescription that I needed. I was going to stay in Miami for my outpatient rehab and live in a condo on the beach. The entire building and property is accessible for wheelchairs, so it would allow me some sort of independence. Getting some natural vitamin D everyday and listening to the ocean was going to instantly heal me, right? Well, it wasn’t as easy as I envisioned. Mentally, it was a huge adjustment. My safety net was gone and I was around people that were able bodied and “normal”. My disabilities really stuck out and the realization of all the things that I really couldn’t do anymore we’re brought painfully to the surface. I went through a series of mini breakdowns along with long bouts of staying in bed. The sun was shining but I certainly couldn’t see it. The words “I still can’t believe this happened to me” echoed in my mind several times a day. The first of the series of breakdowns happened when I was leaving the hospital. We had to order a van that had a wheelchair lift to transport me from the hospital to the condo. Being rolled onto a hydraulic lift, chained to a metal platform and slowly loaded into van that looked more like an ambulance made me feel ashamed and somewhat less of a person. I felt like an animal in a cage being loaded into the cargo compartment of a plane. I broke down into tears. Arriving at the condo was even worse. The ambulance looking van pulling up to the valet area was far from discreet. Yet again, I would have to endure getting on the hydraulic lift, being on display like a circus freak and then lowered to the ground…this time in front of what seemed to me a thousand people. It was probably only a few people but through my eyes everything was magnified. People were looking to see who or what was going to come out of the ambulance van. Who did they think it would be, Kim and Kanye because they most certainly are done with Bentleys and Rolls Royce and on to the more hip and stylish ambulance van. As I was being lowered to the ground a women was walking by the van. She was rocking 6″ Fendi heels and skinny jeans that looked as if they were painted on. She also looked like she hadn’t eaten in 2 years and was on the Diet Coke and Marlboro Lights diet. The only flaw that I could find with her was that the Fendi shoes were from last season. Here I am with half of my hair shaved off looking as messy as ever, wearing a baggy Adidas track suit and feeling as big as a barn while being paraded in a wheelchair in front of all of the “beautiful people” of South Beach. Super freaky Run DMC wheelchair girl was not the kind of look that I ever wanted to go for. This experience was not a good addition to my already low self esteem.

Ann Marie and of course Ross were around to help me with my transition that weekend. Ross pretty much spent the entire weekend running around town to get me the things that I needed to make me more comfortable and Ann Marie spent her time getting all of my clothes and supplies organized and put away. She picked up my many prescriptions and got them all organized so my 24/7 caretakers knew what meds I should be taking and when. I of course, was no help which made me feel even worse that I couldn’t do anything. Words cannot describe what it feels like to lose your independence. There are days that I feel like I’m in prison…

6 thoughts on “HOMEland Insecurity

  1. Mary,

    Im am not sure if I should write this or not. I don’t know you. But I learned of your situation through an friend on her facebook, Nancy Marchetta. She gave the website to follow you on “Eyes Wide Open”. And I did. And I was mezmorized by your words, wit and your frankness. I’ve thought about you alot for the past few months and you are in my daily prayers. You are alot like me! Not that I am witty and good with words, but I love fashion and feel I can appreciate your pain. As an RN that worked Critical Care for 10 years, I have an small understanding of what you may be going through.

    I am so sorry you are suffering. And as you have probably heard, suffering in and of itself is not a bad thing. It can catapult you to a new, more meaning level of understanding our world, ourselves, and our God. Easier said than done.

    Perspective needs to be recentered each and every day. The bible tells us when we are suffering we need to pick up our cross every day. To me this means recentering our perspective every day. It’s easy to think about how it use to be… but looking forward is the key. Terry Gordon wrote a book about his son who is in a similar situation as you, and at a recent book signing, I asked what on a daily basis kept him so joyful and positive. He said every day needs reaffirmation of your goals, even if it was only him and not his son.

    Change is inevitable part of our lives. It happens to everyone. Some people more intense than others. I feel when we can change our perspective, we can change our attitude, we can change our destiny, and ultimately our happiness.

    I am not sure I could do it. But I write from the heart, and you and your family are in my heart and prayers.

    May God bless every day of your life with kindness, beauty, appreciation and joy.

  2. A very nice by Jo!

  3. Mary Angela
    Dave and I check your blog every day. You are in our prayers…you have no idea how often.
    Remember we love you, still, and wish you well through your ordeal. Keep us posted

  4. Hi Mary, This is Jennifer Reynolds. I ran into Lori last night at the mall and when I asked her how everyone was, never in a million years did I expect to hear what she told me. I’m absolutely in shock and just don’t know what to say but wanted to let you know you are in my thoughts and prayers. Do whatever it takes to keep your spirits high!
    Best of wishes,
    Jennifer Reynolds

  5. Hi Mary,
    Just wanted to say hello and that our family prays for you daily. You are such an incredible writer, your words come to life. Thank you for sharing your journey. My journey is different but challenging, I have liver cancer. If you want to follow my story, you can at caringbridge.org then type in LisaCraine. I will warn you that we are not as eloquent as you with words.
    Hugs, Lisa

  6. Dear mary,

    We miss you and your smile. You remain in our thoughts and prayers. Nobody knows what you are going through and we appreciate your honesty. At one time or another we all say why me ? but your why me is worse than my why me ? it is not a contest and we both know somebody else’s why me is worse than yours. But I want you to know that when you ask why me ? I am with you…I have also said why mary ? A girl who has so much to do and share with a bit of fun and laughter mixed in….so be sad when you are sad, lie in bed when you want to lie in bed..but someday it will be better and you deserve that…

    kay and art

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