Cuddling with my frame.

Things I Wish They’d Told Me

The countdown is on- today marks nine days left until they remove this thing from my foot.  I’m excited, but another part of me is scared and I know that I will miss this in some odd, difficult to explain way.  I have only a little over a week left to put the enormity of my lessons and experiences down in writing before it is over.  Over the last four and a half moths, I gained valuable insights that I am eager to share with anyone considering a Taylor Spatial Frame or similar external fixator as an elective surgery.  In no particular order, here are a few things I learned along the way…

1. It is possible your pain will exceed the effectiveness of your pain medication.  

When you awake in the hospital from the initial surgery, the pain will creep up on you and as the surgical swelling increases, it is likely that your pain will far surpass the ability of the nurses to keep up with it.  As the initial swelling from the surgery recedes, you will become more comfortable, but over the months that follow you will inevitably experience excruciating nerve pain, infections, swelling, irritated pins, and even damage to your frame which will cause your pain to spike again and you will wish you had the skill to give yourself an epidural.  It was after one of these episodes I realized that I would never do well in a torture situation and promised myself never to let anyone trust me with important State secrets or bank account numbers.

2. It is going to look worse than it feels.

Yes, it hurts, blah, blah, blah.  Very quickly, though, you will become accustomed to the pain.  I can’t say it really stops hurting, or even that your pain tolerance grows, but you will get used to having sharp stings and aching swells and throbbing pressure and parts that burn.  It will cease to impress you and when people look at you and say, “Wow, that looks like it hurts,” as they certainly will because people are not very creative and they all have the same thoughts, you will likely respond at some point with, “It looks worse than it feels.”  Sometimes you will be lying when you say this, but for the most part, it will be true.

3.  Laying in bed will make you miserable.

Get up.  I know it hurts and you feel light-headed and you can’t imagine standing up and letting all your blood rush back into your limb, but if you don’t get up, it will be much harder tomorrow and the next day and even harder the day after that.  Get up and move around.  Go into the sunshine.  Laugh with other people.  Force yourself to go outside and be active even a little bit every single day because if you don’t, you will just be this miserable creature with a cage on your limb, and every day will last forever.

4.  You can’t stop taking pain medication just because you have no pain.

I’m very happy for you when the pain diminishes enough that you feel confident you no longer need your narcotic pain medication, but not taking it is going to bring you agony.  You need to wean yourself off of it and for that you need to talk to your doctor to make a realistic plan.  The worst part of my journey so far has been the chemical withdrawals.  Hands down.

5.  People are going to stare at you, everyone will think you want to talk about it with complete strangers, and you’re going to feel self-conscious every time you step outside of your own home.

Adults who know better will stare at you as you walk by.  Children will point and ask their parents what that is.  Some children will talk to you, and for some reason this will feel comforting and not upset you, perhaps because they are not afraid and aren’t rejecting you for being scary.  Adults will interrupt you when you are clearly reading an email on your phone in the elevator, or have headphones in, or even talking on the phone, to tell you a story about their aunt who had a broken toe because this seems like exactly the same thing.  Everyone will want to know what happened, but if you tell them you have been disabled for fourteen years, perhaps they will learn that nothing in another person’s life is inherently their business just because they are finally able to see it.  You will also take great joy in making up stories about what happened, and one of these will inevitably involve sharks and orphans and your bold, unbridled heroism.

6.  You will discover that very few places are REALLY ADA accessible.

You will go to a McDonald’s, for example, you will note that there is ADA parking, a wheelchair ramp onto the sidewalk, a wheelchair emblem on the window next to the entry door indicating it is ADA friendly, and then you will look at the door and wonder how a person in a wheelchair is supposed to open this thing on their own.  You will struggle with it yourself on crutches, or with a walker, or with a cane.  You will notice restrooms equipped with ADA accessible bathroom stalls, but a bathroom door too heavy and cumbersome for anyone other than an able-bodied individual to open.  You will note that the parking garage at work has ADA accessible parking closest to the garage elevator, but the whole garage is still a 500 yard walk to the building.  You will start to ask yourself how disabled individuals carry their own lunch trays, or make it to meetings across the building on time, or use vending machines when the card swiper is six feet off the ground.  You will get angry at people who do not hold doors, but you should because they are assholes.  Everyone should hold doors for everyone.  That’s just being civil.

7.  You will feel like a burden.

No matter how hard you try to contribute to your own household, you are going to feel like a burden on those you love at some point.  When you do, just tell them so.  Say thank you for everything, every time.  Be kind to them when they get tired of helping you once in a while.  And remember this will not last forever.

8.  You will never be able to sneak anywhere.

Your fixator will jingle with every movement, especially once you are told to loosen bolts, and you will feel like a cat with a bell on their collar.  Your crutches or cane will have a distinct sound and people will joke that they can hear you coming before you round a corner.  Hit them with your cane.

9.  You will gain weight.

Of course you will.  Your body will want calories because it is trying to heal, but you will be unable to exercise nearly the entire time.  When you are active, you will become exhausted so quickly that there is no hope of burning off that panda express you just ate.  Also, you will crave kung pao chicken as though you are a pregnant woman hatching twins.  Or at least you will if you have good taste.

10.  You are going to discover that you are capable of anything.

Even with a metal frame around your limb, you are going to soon learn to make adjustments to your daily activities that will enable you to go about your life very much as you did before.  You will see that your limitations only exist until you have invented a way to work around them.  You will drive.  You will walk. You will work and shop and clean and run errands.  You will go wherever you wish.  You will do whatever you want.  The only thing that will slow you down is your own doubt.

11.  You will love your frame.

You may sit up at night, your partner slumbering peacefully beside you, and marvel at this hunk of metal holding the pieces together on your appendage.  You will come to respect it, and you will learn to appreciate it as you recognize how it is giving you an opportunity to heal and regain your life which could not exist without it.  As you learn to put weight on your limb against your mind’s own unwillingness to do so, you will come to depend on it for the support and stability it provides, and when you loosen the bolts at last, you will feel scared that it is no longer protecting your bones from being harmed by your weight.  As the time approaches to remove it, you will realize it is going to be bittersweet.  This thing has granted you a new life and now you have to say goodbye, and learn to function all over again without it.  You will be unable to explain this sorrow to anyone but your own heart.

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4 thoughts on “Things I Wish They’d Told Me

  1. Hello,
    Thank you so much for sharing your journey through your blog. Hopefully you will be uploading another update soon on how you’re currently doing. I was a passenger in a terrible car accident on September 25, and was left with serious injuries throughout both my legs and feet. I have a frame on my right leg and foot and its been quite a struggle since I can’t put any weight on either leg yet. I was finally released from the hospital just over a week ago, and even though I’m staying with my parents during my recovery, saying that these last few days back home have been extremely hard is an understatement! I hate to admit it, but during my awful time in the hospital, my care was just easier on everyone. I’m sure that things will get a lot easier as time progresses, at least I hope so. Anyway, thanks again for the time you spend on your blog, I truly appreciate your posts. I hope you’re doing well and take care!

    1. Sarah,

      Thank you for the encouraging words; I’m sorry to hear about what you’re going through. You are correct that it will certainly get easier, and it sounds like you are at the most difficult part right now. There is some comfort in being in the hospital and not feeling responsible for your own welfare to some degree, but I firmly believe the real healing does not begin until you come home. I would urge you right now to be very kind and forgiving to yourself and the loved ones trying their best to care for you. You are all undergoing a trial that will change you forever and will help to mold your character. You will learn things about your own strength and the strength of those closest to you. You are going to surprise yourself and in the end, I know you will be proud of all you will survive.

      I wanted to direct you to a support group I found on Facebook with others dealing with the same situation you are in: Ilizarov/Taylor Spatial Frame Support Group This group has been my saving grace and is private so you need not worry about sharing your entire experience with everyone you know on Facebook.

      I do intend to post again soon, but just so you know there is a light at the end of the tunnel- my frame was removed last Monday and the next day I walked a mile in a walking boot with my eldest son. You’re going to make it. Please stay strong and don’t ever let your doubt or fear get the better of you. Much love to you, Sarah!

      Marie

  2. Hi Marie,

    Thanks so much for documenting your experience. My husband has just been fitted with a frame that looks exactly like yours and virtually the same wire locations – he fell off a roof. As a carer, your blog is extremely helpful for me to get an idea of what to expect and how I can support Simon during this journey. Especially the part about medication withdrawal! After three weeks in hospital and lots of opiates, it’s something we’ve both worried about. Now I know, it will happen, it will be hell but there will be an end in sight. Best wishes all the way from South Africa!! love Linda

  3. hi
    i get an external fixator put on my foot wendsday the 4th because of surgery’s that went wrong and i thank every one for there post because i now know what to look forward to.

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