Blessings in Disguise

For those of you who know my story and have previously followed my blog, welcome back! For those of you who aren’t familiar, thank you for stumbling upon me (in blog form) and I hope you find some inspiration or at least learn a little something from my shared experiences!

PSA: There will be profanity in this blog, so if you’re not a fan of an occasional curse word or threethis might not be for you.

My ultimate goal in recreating my blog is to be a little more candid with my readers. Also, and more importantly, I want to inspire others in similar situations to mine to become more independent and share some tips on how I survive in the big, rough city of Chicago on my own! I will share everything from my morning routine to what the nightlife is like for us gliders, how I get all glammed up, making new friends, traveling with a SCI and so much more! Before I get into all the fun stuff, I must first explain how I got to where I am today. It was a very bumpy road but it led to great things!

While I was writing my old blog, although many would say it was pretty raw, I was going through an extreme amount of personal obstacles that were hindering my mental recovery immensely, and I was hiding it from everyone. These hardships made it impossible for me to be motivated myself, let alone motivate others with my words. I never let my readers recognize there were any truly deep problems going on, besides the fact that I suffered a spinal cord injury. I know there are hundreds of thousands of other people suffering from spinal cord injuries, in fact there are almost 370,000 in the U.S. alone, who would benefit from me sharing my stories and experiences.

When someone goes through a traumatic injury it affects their entire support system. Your parents, siblings and friends are going to be severely distressed and overwhelmed. My situation, like most, was pretty uniquely devastating for everyone involved. But I want people to see the silver lining in all the suffering and extract the blessings in disguise. My last blog was cut short due to the personal difficulties I was facing. Now, over a year later, I’m finally ready to share this with my following.

About a year and a half ago I had gone from being told I would never feed myself again to walking with a walker. I was beating every odd. The doctors and surgeons who had told my parents I would never be an independent young woman were dumbfounded by the progress and strides I was making, and so quickly. Walking again was my main focus and goal in life. It’s practically all I ever thought about. All the anger and frustration I had built up inside of me was taken out in the gym during physical therapy. I was working with some of the best therapists and trainers in Chicago and boy was it paying off! But even though I was making all this progress and supposedly inspiring so many people, I was rapidly falling into a dangerously deep depression.

A month before my life altering accident my mother asked my step-father for a divorce. A security deposit was put down on a lovely 3-flat in the city. My mom, brother and I were all set to separate ourselves from the family that had been built for over 10 years. And then BOOM… I break my neck and become paralyzed. I was under my stepdad’s insurance at the time, so the divorce was temporarily put on hold while I recovered. This created a huge divide in my support system, not to mention a toxic environment for my grieving family. The negative energy in our home made it unbearable at times. It was going on 2 years of being bedridden unless someone helped me into my wheelchair. So, whenever there was an argument or screaming match going on in the house I was forced to lay there and endure it. The only person I blamed for this hell-hole was myself. I’m the reason they had to stay together, I’m the reason they’re struggling so bad with money, I’m the reason my family is dealing with depression. These were the thoughts that haunted my mind for years. I went from blaming it on myself, to taking it out on myself.

During those fights I withstood I would hit myself, scream and cry while telling myself it would have been better if I died. Usually my brother would be there to console me. He would put me in his truck and we would just drive, but he moved to my dad’s house in Michigan. My dad got very ill, so my brother moved there for a while to help out. His absence really affected me, especially during those loathsome times. We’ve always been extraordinarily close and not having him there really added to my depression. Not to mention, my best friends were starting to drift away from me as well. Most of my friends were the same age as me (22), so they were at the height of their party days. Having to help with the wheelchair and the occasional bathroom trip proved to be too much, and this made me feel like I wasn’t even worth being friends with anymore. I could count on one hand the amount of times I was invited out with my friends and their friends. I don’t want to make it sound like there was no effort ever made on their part, but any time we did something I was usually the one initiating it. In the beginning it was new and exciting and we were kind of having fun with it, but after a couple of years, taking me out became more of a chore than anything. And who wants to do chores while they’re out trying to have fun? So, at the time I really didn’t have anyone to talk to and it really started taking a toll on me. Horrible thoughts creeped into my mind constantly… What was thpurpose of me surviving? Why would God do this to me? What did I do so wrong in my past that I deserved this? Am I ever going to feel happiness again? And most importantly… How the fuck am I going to get out of here? 

A long-time friend of mine saw the limitations when it came to my independence. Mainly because getting out of bed was something I still couldn’t do alone. I needed someone to lift me up and sit me down. My friend’s sister is disabled as well and had an electric scooter that she wasn’t using or planning to use in the future. So, they donated it to me, and it changed my life! I could get myself on to it and just go! I would ride down the block and sit by a small pond and just be so thankful to be alone and not be afraid. I could take my dog on walks and not have to worry about him getting loose and running away, because his leash attached to the chair. This totally lifted my spirits and made me much more independent. Most importantly, I taught myself how to transfer on and off the toilet, which eliminated the need for adult diapers. How freeing is that? It doesn’t get much better than trading in Depends for cute Victoria Secret panties! This alone helped immensely with my confidence. Being able to go to the bathroom alone, shower alone and get out of the house on my own were some of the most freeing barriers I’ve broken.

Some say that before things get better, first they get worse. Whoever came up with that saying deserves a big ass fucking award, because my God is it true. One night I was tidying myself up for bed and after I was done brushing my teeth I went to roll through the doorway in my electric scooter. Just as the first set of wheels hit the threshold bump my right foot slipped off the footplate and got stuck between the door frame and the chair. Most people assume that because I’m paralyzed I don’t have any feeling, but I have complete sensation. My tibia (shin) was broken and it hurt like a bitch and a half. Luckily it was only broken ¾ of the way, so no surgery was needed. Are you fucking kidding me? How will I do therapy now? All the sweat, blood and tears that I shed during my recovery were all for nothing. 

The broken leg was followed by a very scary complication with my IVC filter. An IVC filter is a little contraption that looks like a mini head scratcher that keeps any blood clots from traveling to the lungs or heart. Here’s a picture. This filter was put in when I first sustained my injury. The filter broke in several places and two pieces of the metal actually completely detached and migrated so far into my liver that they surgically cannot be removed. The first surgeon I went to told me there were a couple more pieces that could break off and migrate at any time, but she refused to take it out because it was “too risky of a surgery”. This scared the shit out of me because all I could think was what if it punctures a lung or my heart? This thing could kill me at any second! Thankfully I found someone who specializes in taking them out. He’s actually the only surgeon in Illinois who does this type of operation, or at least he was at the time. It was a very complicated and challenging surgery. They predicted it would take about 45 minutes, but it ended up taking over 5 hours. He showed me the filter afterwards and it literally looked like a dog had chewed it up. This shit was inside me in order to PREVENT injuries?! Now I see why that other doctor was like uh-uhhh! But it was out, and this was such a relief!!

Throughout the 2 weeks I spent in the hospital because of the filter I only had a few friends come to see me. Friends that I’d had for several years hadn’t even sent a text asking how I was doing. The ugly truth really showed itself then, and I realized I’m the only one who’s going to get me through this. People who I thought would never leave my side had suddenly vanished. I worked so hard to keep my friendships alive after my accident. I let a lot of things slide that I normally wouldn’t have. I let some of my best friends use me in order to better their own lives. Who was this doormat? The old me would have dropped someone so fast if they pulled this shit. I could understand how me being depressed would affect my friends. But aren’t friends supposed to make those tough times a little less terrible? Stick by your side when shit gets rough, not just leave you. At this point I hadn’t made any new good friends since being chair bound, so I think not being confident in that aspect kept me from cutting people off. For the longest time I thought nobody would want to be friends with me because I was in a wheelchair. You know what? I don’t need this, fuck them! The friends that truly matter are still here, and that’s all I need. If you’re not going to stick by my side during the bad times, then you’re not worth the good times.

Due to my broken leg I was removed from physical therapy and told not to bear any weight (stand) for 3-4 months. Because I did not get consent to return to physical therapy from my doctor, I was put on a year-long waiting list to return. This would diminish all the improvements that I worked so hard for. The last 2 years I completely dedicated my entire life to recovering and within one second all of it was taken away… again. If you’ve ever heard the saying “if you don’t use it, you lose it”, well that applies to this situation perfectly. I had the use of my legs taken away from me twice now, and my optimism for the future was starting to diminish. I thought to myself.. What happens if I overcome this broken leg and dedicate my life to therapy again, and then something else happens? I could be going to school, living life and just moving on in general. It may sound like I gave up, but really I just wanted to get on with my life. Every day for the past two years all I thought about was therapy and upcoming doctor appointments. I wanted to travel, go to school, make new friends, move out on my own. I wanted to be a normal 22-year-old, well as normal as possible. At that point I could really care less if I walked again or not, I just wanted to be happy. Making a new life for myself was my new main goal, so that’s what I did!

2 thoughts on “Blessings in Disguise

  1. Bonjour Tiffany,

    Just discovered your vlogs and wordpress. I’m sorry to hear about your tibia fracture. That blows. I can understand the unwillingness to put your feet down on the footrest ever again (but how do you avoid pressure sores on your butt now? I’d be worried about those for me – they’re my number one anxiety).

    Anyway, just dropping in to say I think you’ve made the right choice, RE: your last paragraph. Life in and out of a PT rehab centre isn’t a fulfilling life. My physiotherapist has unironically become one of my best friends over the past year, so I’m glad for the time spent there, but I’m really happy to be back home (6 days and counting). About the act of walking, I’ve decided to trust engineers and then scientists to make it possible again in our lifetimes; and in the meantime, like you, I’ve decided to keep going and move on.

    Seeing the videos of you living alone and doing pretty much everything alone (and with panache!) is inspiring. Thanks for the work you put into them! 🙂

    Keep on taking great big happy bites out of life, ’cause it’s way too good to let it pass by.

    Best,
    Simon (C6-C7 from France)

    Like

    1. Hi Simon!!
      You just made my day with those sweet words! Thank you so much for the love and support & for watching my videos. When it comes to sores I move around a lot and lift my butt up as much as possible to avoid getting sores. Trust me, I’m very paranoid about it as well. Especially because I’m so thin, I’m at greater risk of getting them. But yeah I heard about a new surgery they’re doing in Australia with not stem cells, but another kind (I’m drawing a blank).. but they take tendon from your foot and put it where you broke your neck then they add the cells and it’s supposed to grow new nerves. I’ll have to look for the link and send it to you. But I’m definitely with you on enjoying life and if some genius figures it out one day then thats great, but I can’t make PT my whole life forever. I might look into stem cell soon, but I want to do a lot more research to find the best place out there. If I’m gonna spend that kind of money I want it done right. But yes, thank you for making my day =) Talk soon!
      -Tiff

      Like

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