Thankful

When lying in a hospital bed motionless after breaking your neck, in the middle of a hospital team’s huddle, while there telling you you’ll never walk, feel, and be the same way again it can be difficult to rummage up gratitude for your life. BUT this doesn’t mean I’m not thankful for all the amazing things I have going on in my life. And with Thanksgiving of upon us…

 

Here are, in no particular order, 10 things I’m grateful for after my spinal cord injury (SCI):

 

10. Awesome concert seats- almost every concert, festival or comedy show I have been to; I get upgraded to much better seats. That’ll it never happen as an “able-bodied” person.

Amazing seats at a Ben Harper show.

Amazing seats at a Ben Harper show.

 

9.Voice recognition- without this technology I wouldn’t be able to do certain things. Things like dictating to my phone/computer to type things like this… would not be possible. Being able to yell across the room to tell my phone to call 911 (thankful this tech I haven’t had to use yet). Are just a few things that voice-recognition empowers me to do.

 

8. Facebook forums and YouTube- has answered so many questions for me over the years. As well as giving me an outlet when I need to vent about things only other people with a SCI would understand.

 

7. Caregivers- also known as PCAs, CNAs, and HHAs. I literally wouldn't get out of bed without them…. They help me prepare my food, they bathe me, wipe my butt, they clean my apartment, they drive me places, they listen to me complain on bad days, they listen to my foul mouth, they watch the crazy movies that I watch, they help me with everything and anything during the day and night. They are almost always underpaid and underappreciated. Like many careers they do not get the wages and benefits that they deserve. If you know a caregiver thank them for all that they do.

 

6. Medications- without Baclofen, Tizanidine, and the host of other medications that I take I wouldn't be functional. In some cases people wouldn't be alive without medication. My body is constantly riddled with muscle tone and spasticity and without medication I wouldn't be able to function throughout the day, even things as simple as brushing my teeth on my own would not be possible. Hell, I don't think I'd be able to safely sit in my wheelchair without Baclofen.

 

5. Suppositories- this is a subject that not many people like to talk about, yet it is one of the most important things that we do during our day. Most people with spinal cord injuries uses a suppository in order to have a bowel movement. So I am very thankful that they help me poop everyday!

 

4. Spasms/tone- despite what I said about medications...not all people with SCIs have spasms or muscle tone. But for those of us that do, at first it is very frustrating and you wonder if they'll (the spasms) ever stop or get better. For some of us it doesn’t and for people like myself they get slightly better, but stick around. If it weren't for spasms or muscle tone I think my muscles would not be as strong as they are, I would probably be more atrophied, my bone density would probably be far worse and my circulation wouldn’t be as good. So even though they are frustrating they have great benefits and I personally would encourage anyone that has manageable spasms to keep them around and not try to overmedicate against them.

 

3. My wheelchair-over the years I've met many people have been injured for 20, 30, 40+ years and hearing stories about when they were first injured and the equipment that was available to them, or not available to them, makes me so grateful that I was injured when I was. My wheelchair allows me to be comfortable for very long period of time all while being able to access many things around me because of the amazing functions that my chair has.

My Wheelchair that stands me up!

My Wheelchair that stands me up!

 

2. Students- I'm lucky enough to know a few people that are employees at various colleges around the Boston area, which has opened doors to me to work with various types of students that are learning from the professors that they can't just design for “able-bodied” people. Their learning that inclusivity and end-user product designs are just as important as making something look good. It's also refreshing to know that these young minds are being exposed to all manners of ability. Hopefully, it will teach them to be more open-minded and accepting in all aspects of life.

 

1. The Americans With Disabilities Act- this is a doozy! Without the ADA my life would be very different. I wouldn’t be able to go to the places that I typically want to go to. Curb cuts, ramps and elevators, my service dog, my van, my apartment, and so many other things would not be readily available to me. Though I don't think I would be stuck inside or considered an invalid (which would have been the case years ago) I still wouldn't have as many opportunities as I have now.

 

So there they are and I know that there are many more things that I'm thankful for, but I think this blog post does not need to be that long. I'm of course thankful for friends and family and all the support and love that they give me. I am thankful for all of you readers and Internet friends that also give me lots of love and support. So thank you for reading! In the comments tell me what you are thankful for.

Yogurt Cup Holder

In this entry I will be taking a slight detour from my story. Especially since I am waiting for some medical information that I wanted to share with you all in the next chapter of my recovery. So for this entry my girlfriend Radha was making the good argument that showing off this cool device I created could really help someone whom might have a similar situation. So here it is...

Today I want to talk briefly about assistive technology/devices and more specifically the DIY side of assistive devices, specifically those that have helped me to be a more independent person. This particular device I created is super simple, very cheap to make, and easy to change or customize to suit anyone's needs.

With my current hand and finger dexterity I'm not able to hold on to many things easily. I typically avoid trying to hold on to something that is easily spillable or crush-able because I will inevitably spill or crush it! My hands typically spasm to a closed fist when I hold on to things. Think of when you're interacting with a newborn baby and you place your finger on the palm of its hand. The typical reflex is for the baby’s hand to close and clasp onto your finger. Well, this is what happens with my hands, only with adult force. So anything that I try to grasp that happens to have a larger circumference than what my hand opens, my hand will spasm and ultimately squeeze the item. That's all well and good if you're trying to chug maple syrup, but not so great if you're trying to stay clean and enjoy your maple syrup one spoonful at a time.

Though I do feel I belong in Vermont, I don't typically need to chug maple syrup!

All this considered, what is on my menu 2-3 times a day is yogurt that comes in the small plastic containers that I need to take with my medication. On a side note: not only is the yogurt beneficial in coating your belly, it also aids in digestion, and yogurt is said to have great bacterial cultures that help with bowel care….AND as an added bonus, Greek yogurt has lots of protein (10-15g depending on the brand). If you know anything about spinal cord injury, proper bowel care and nutrition is the top most important musts to live a healthy and independent life. Currently I've been having some tailbone skin issues, and the added protein that Greek yogurt provides will assist in the healing process.

So about my super simple creation:

Because I eat yogurt, and for years have needed someone to feed me my yogurt I have had to deal with the awkwardness of receiving too much, or too little in each spoonful. Then the added aggravation of the person who is feeding me shoving the spoon into my mouth, or annoyingly holding the spoon in front of my face until I have swallowed and ready for the next mouthful. All of this taking a huge amount of patience on my part as you well can imagine…...

I have recently started working with a new occupational therapist at Spaulding in Medford. Her name is Nicole, and she is freaking awesome! I was dependent on someone else to do many things in my life until she came along. Nicole thinks out of the box with me and together we have created a little device that has made a huge difference in my independence!

Here is how my/our creation was born…..

Not long ago my friend Amy introduced a product called Instamorph to me. It is a type of plastic that is moldable when exposed to temperatures greater than 120° Fahrenheit (48° Celsius for those of you in countries that use the awesome metric system). You can get the product in different colors, it's reusable, and it's non-toxic. The creators of Instamorph suggest using boiling water, or a heat gun to melt it. However, I've seen people on YouTube using blowtorches and lighters, not ideal in my opinion, because it tends to leave burn marks on the product and depending on your functionality it can be very unsafe.

So….using Instamorph, Nicole and I came up with a holder for my yogurt containers and my Dixie cups that hold my medication. The product can really be molded to hold just about anything.

Here is a video I made of how to make this particular device:

I'm happy to say that I now eat my yogurt independently whether in bed, or sitting upright in my chair. It is amazing how things taste a lot better when you're feeding yourself! My yogurt happened to be the last and final thing that I was not able to feed to myself and all it took was something as simple as this little cup holder to change that……..interesting how thinking out the box and brainstorming can foster creativity!


Many thanks to Amy for introducing me to Instamorph, and Nicole for creatively brainstorming, and I cannot forget to mention my caregivers that have made,  or helped me to modify these holders for me. Last but not least a big thank you to Radha for pushing me to make this video and write this blog. All a case of great minds working together!
 

Operation: Air Ambulance

There we were, my mother, father and I in the small hospital cubicle that I've called home for the last 3 + weeks when we get the news that the med flight crew has arrived at Vall d'Hebron. A combination of a sigh of relief, and that electric feeling of excitement rushed over the three of us, all at the same time. ”It's actually happening, we're going home.” I said to my parents. “I'm going to kiss the ground when I arrive at Logan Airport.”

I was set to get onto a private Learjet with two med flight nurses, and two pilots. Our destination; Logan Airport in Boston, and then from Logan Airport to Spaulding Rehab Hospital, Nashua Street, Boston.

There was definitely a few moments between when I was told that they had arrived, and when they actually came into my room, that I had felt that this trip home was not going to happen. Am I really going home? I had become so accustomed to accepting bad news that I actually expected my doctor coming into my room and telling me that they needed more tests because they found fluid in my lungs again, or that I was not stable enough to fly, or that the plane that arrived was not for me... As if there was another American patent at Vall d'Hebron that had broken his neck and he was going home, not me. After the month that I had had, this was just too good to be true!

But luckily two wonderful Nurses (obviously the med flight nurses because of their navy blue flight uniforms and their large medical bags) walked in bickering back and forth, as if they were sisters, talking about what the plan would be for getting me from hospital to the jet. Their sense of humor added to my excitement of going back home, and eased my anxiety of being stuck in a small plane for 13+ hours with people I didn't know know, and had to trust with my life.

They took a few minutes to explain to me what the plan was, and what to expect. They described the jet as being small, with tight quarters and asked me if I'd be ok lying down for the whole trip, as there were not many other options. They also offered the option of giving me something to help me sleep. I explained that I was OK with this, that I was not claustrophobic, I probably didn't need something for sleep, and that I just wanted to get home.  They then explained to me the flight plan. We would be flying to the Azores, then over England, then Iceland, then Canada, and finally to Boston. We would be making one stop for dinner, and a couple of stops for gas.

I remember getting to the plane and being greeted by the pilots. They told me that it would be an easy flight as the weather was cooperating. They explained that we would be flying much higher than a normal commercial airplane, and that the ascent and descent would be much longer than normal. The whole crew assured me that they would do everything in their power to make me as comfortable as possible. All the while the “two sisters” were joking around with each other making me feel much more at ease. They really were a riot, and I certainly needed the distraction.

Our first stop was in the Azores where they opened up the cabin door to allow the fresh ocean air to come into the plane. Breathing in that fresh air was good for my soul. I will say this, at this point I'm getting sick of breathing fresh air while confined to a stretcher…. What I really wanted to do was  just get up and run out the door, and jump into the water! 

Refueling took about a half hour, and I kept asking them if we could stay and go to the beach. I told them I was fine and that there was really no rush. Try as I might, they told me it was not a possibility and we had to be on our way.

We made a couple more stops before we had dinner, and I have to say the dinner was delicious! The best airplane food I've ever had! Helene (one of the flight nurses) said that they made it special for me! It was a wonderfully, juicy steak with all the fixin's. It was really the first steak that I had had in a long time as well - so even tastier! I wondered if they prepared these meals specifically for their injured passengers to make them feel more comfortable while on such a tiny cramped plane….a distraction from reality…. and according to Helene that was the case.

Many thousands of miles, and many hours later we arrive at our destination; Boston. My home. I clearly remember how badly I was aching to get out of the jet and off of that tiny stretcher and into a “comfortable” hospital bed. But of course there is a glitch with customs and we were delayed for what seems to me, forever. At this point I was done. I just wanted to get up off that stretcher  and walk out of that flying Pringles can. But that was not physically possible anymore…. And it won't be for some time  maybe not ever. I felt as though I was a prisoner in my injured body and now that I am home, it's time to break out of that prison.

Customs released the ambulance and we were on our way to Spaulding where my sister awaited my arrival. When I arrived through the double doors of Spaulding she is waiting in the lobby next to the Dunkin Donuts, of course! Both her and that Dunkin Donuts  we're very welcome sites. When we see each other we are overwhelmed with emotion….but we did our best to put on our most strong, happy face for each other. I know that we were both a wreck. She came with me, and my two med flight nurses  to meet my new team nurse on the floor that I would now call home for the next six and a half months of my recovery.

And this is where the fun begins.

 

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Hope Whispers - A Mother's Perspective Pt. 2

"The only limits you have, are the limits you believe………."

-Dr. Wayne Dyer

It is now six years since Ryan experienced an accident that made a significant difference in his life…….his life as he knew it for the last 30 years. On this day his ability to get up in the morning, swing the blankets off his sleepy body, stretch his arms and legs and place his two feet on the floor to begin his day stopped abruptly. All of the habits he was used to, all of those simple movements we take for granted, stopped for Ryan without even a moment's notice. He could no longer scratch an itch, swat at an annoying fly, blow his nose, or go to the bathroom when the urge presented itself. If you read my first blog you already know the details of Ryan’s accident that happened on March 6th, 2011.  

Diane, Ronald, and Ryan deroche  

Diane, Ronald, and Ryan deroche  

When I think back to those days in the Vall d'Hebron Hospital in Barcelona, Spain, I think of the airplane ride from Boston to Spain. I remember that heavy, sick feeling in the pit of my stomach. I remember the terrible fear my husband and I felt when sitting on the plane knowing that we had to endure a 9-10 hour plane ride that would bring us to a foreign place where our son was waiting for us to come and share the awful news with him, just waiting and hoping that we would come into the hospital room and tell him that everything was going to be all right. To tell him that the doctors will fix everything and that this was just a little hiccup in his young life.

I remember that it was raining and miserable when we landed in Spain. We could not even gather our thoughts, let alone find our way through the strange airport. We were in shock. Thank God that the company Ryan worked for provided us with a translator and guide. Our instructions were to go to the designated gate and look for a woman holding a sign with our name on it. Not being able to even think, we followed instructions and found our guide and saving grace: Penny and her husband Alan. Although she was our appointed guide at the time, in all actuality she became our personal Guardian Angel. I think back on the 4-5 weeks we spent in Spain and I am honestly not sure how we could have functioned without her. As promised, Penny and Alan were there, dutifully waiting for us with kind, sympathetic smiles, smiles that spoke of the empathy they felt for us. For they too were parents and knowing why we were there, could only imagine being in the same situation.

The ride to the Hospital seemed to take forever. Thank God for our guides because not only were we unable to function, but being in a foreign country and following directions is a challenge in itself, never mind being in the state of mind Ron and I were in. Time was moving in slow motion and all I remember thinking is that this all has to be a bad dream or terrible mistake. Someone please pinch me and wake me up because I am not having a good time. This is not what I would ever imagine happening to me….never mind my child!

There are moments in our lives where time stands still and we can remember the minute details, as if our senses are on heightened alert. I so clearly remember walking into the hospital. I remember the long driveway and curved stairway heading up to the Emergency front door, and the small coffee shop right outside the front entrance. Once inside I remember the light green walls, the display case in the main entrance with antique operating tools in it. I remember thinking that it was a strange hospital display reminding me of a horror movie. I remember the small 8x10 conference room we were escorted to before we would be allowed to see Ryan. The room with one old metal desk, four chairs and bare walls, a 10 foot ceiling with one light hanging in the center. So cold. There we sat, my husband, Penny, Alan and I, silently waiting for the doctor and charge nurse to come in and tell us the unthinkable news….the news that no parent ever can be prepared for.

After what seemed to be for ever, the doctor and nurse arrive. Only adding to the intense stress of the situation the doctor spoke very little English, this is why we need Penny. The doctor speaks, Penny translates, we acknowledge that we understand….this form of communication goes on until the whole prognosis is out. We think we understand, but the words still do not sink in. “Your son has sustained a spinal cord injury at the cervical 3rd, 4th and 5th level. His injury is complete, meaning that he will not be able to move from the nipple line down”. We ask him to repeat this, maybe if we hear it again, there will be more hope in his words. His message does not change. But we still think that maybe this doctor in Spain does not know what he is talking about. At this point our minds are shutting down and all we want to do is see Ryan. We need to see Ryan and then we will be ok.  

Walking into the Emergency Room and seeing Ryan for the first time post - accident is a picture that will be forever etched in my mind. He was still in his clothes, although his shirt was torn from the emergency technicians trying to gain access to his body. He had a neck brace on and was hooked up to a heart monitor and IV’s.  We look past all of that and other than the apparent abrasions sustained from the accident, he looked ok, at least not as bad as the doctor told us. Hope surfaces again and thoughts of miscommunication came into our minds immediately. We think “he is ok,  it is all a mistake, a terrible mistake.” Ryan looks at us and actually smiles. My heart feels like a weight that is swelling in my throat and feels like it is being wrenched out of my chest. How can I possibly be strong for him?

I am not sure where he came from, or who he takes after, but it is Ryan who is actually consoling us. He is the one lying on the stretcher, in the emergency room, faced with the devastating news of how he will not move again, and HE is consoling US. He actually makes attempts to make us smile with his sick sense of humor. The next hours are a blur. Our parent mode starts to kick in and we are now all three working as a team. We are in this together and listen carefully to the doctors who tell us the plan for surgery and rehabilitation. My immediate plans to head home to Boston are very quickly squelched. Ryan is in no way stable enough to make any kind of flight home. We still have no idea of a timeframe but know that it will be at least a few weeks before he is anywhere near stable enough to consider travel. First things first: Ryan’s surgery and physical stabilization.

I know that there are many first times in our lives, but this is a first time I never imagined I would be experiencing... Ryan on the emergency room stretcher, Ron and I on either side of the stretcher being mindful of the IV bottles and many other tubes connected to Ryan helping the medical team make determinations on how his body was really doing. The three of us trying to remain calm and pulled together, and fill the silent spaces with surface chatter. While all the time we were really trying to absorb and understand what was happening and what in God’s name happened to Ryan.  

We learn very quickly that he will have to go into surgery and that the “team” of doctors are trying to determine the best ways to repair his neck. It is awful how we cannot understand much of what they tell us. The nurses and medical team all stop to explain what the plan is but our minds are still not working correctly. Shock was still keeping us from totally understanding what they explained. Thankfully Trek (The company Ryan worked for) had also provided us with a specialist from Wisconsin to connect with...another Guardian Angel. We called him to help us understand what would be happening during the surgery, and also to consult with him as we moved through the recovery process. Dr.Cliff Tribus played a significant role in helping us to feel more confident in the medical team and what they were doing for Ryan.

We were told that Ryan would be operated on within the next 12 hours and they would enter his neck from the front, to the left of his throat. About a 4 inch incision. The team explained the work that they would do and that the process will take 7-10 hours. Ryan’s welfare and future were in their hands.

Day 2: A new beginning…………..

Ryan responds well to the surgery. He was assigned a room in ICU, and Ron and I now make plans with the hotel we were set up in (hotel arrangements all set up by Trek Travel). The hotel is within walking distance of the hospital and the walk actually turns out to be a therapeutic distance for sorting out our thoughts when leaving the hospital, and when returning, a way for us to prepare for the day. We make friends with the hotel employees and the coffee shop ladies even though we speak very little Spanish. Empathy and the need to connect supersedes all language barriers.

The next three weeks are the indicators of Ryan's progress and journey back home. How Ryan’s body heals is the real ticket back to Boston. So much happened in that timeframe, so many details of how medicine is not the do all, end all to how a body will heal and repair from a traumatic accident. To be honest, I truly feel that it was Ryan’s ability to look fate right in the eye and defy the odds. Ryan was part of a team of his own. He and his body were not doing anything without his mind, and it was his mind that was in control. Ryan worked diligently every waking hour to reconnect his mind with his body. 

I remember movement started to happen within hours after his surgery. This was our first glimmer of hope. Ry would lay in bed full eye contact on his big toe, or his hand, or the tip of his pinky finger...willing the appendage to move. How simple it sounds. It was not long before the medicine we all needed happened, his finger moved and then miraculously his big toe moved…..ever so slightly…..but he made it move! There is nothing that will stop him now!

When the world says give up….Hope whispers “try one more time.”

I remember how difficult it was to not think about how very different it would have been if we were in Boston near our families and familiar hospitals. This said, we are grateful for having Ryan’s doctor, Dr. Viejo Gonzalez (Gon-THAL-Les) and the whole medical team, including the many doctors who came in for consult, the nurses, and wonderful aides and technicians who all were nothing but respectful and sympathetic to our situation. Everyone took part in our emotional healing including the two women who worked in the small coffee shop outside the hospital, and the employees from the Hotel Alimara where Ron and I called “home” for those 4 weeks. We will also be forever grateful for Penny and Alan and their beautiful daughter Tashi,  and how they diligently and lovingly held our hands and hearts as they guided us through the maze. We will never forget any of these wonderful people who came into our lives when we needed them so.

It has been 6 years since Ryan’s accident and I have never heard Ryan express anything about a physical limit with a “poor me” attitude. I have never heard him say “I can’t”, but I am sure that Ryan has days when he has negative feelings and his hope factor is low. My mother used to tell us when we were kids that if you think positive thoughts - only positive will happen… and Ryan is a testament to this statement. Positivity oozes from his pores…..and he has a way of making positive contagious.

Just as the late Dr. Dyer stated “the only limits you have…...are the limits you believe”.

 

 

 

 

Vall d'Hebron Pt. 2

My surgeon, and nurse (acting as a translator) pulled the hospital privacy curtain back. Dr. Gonzalez, MD began to explain the repair work he did to my spinal column and why. As a refresher from my first blog, he said they originally were going to cut a chunk of bone from my hip to use as a replacement for my C4 vertebrae. Instead they decided to dig out all of the bone shrapnel from my neck and literally glue C4 back together, then encase and stabilize/support C3, the reconstructed C4, and C5 with a titanium plate and 4 bolts. I was told that both C3 and C5 sustained minor fractures, while C4 sustained the most damage.  At that time, they were also concerned about fluid buildup in my lungs. They discovered what appeared to be a tiny puncture in my right lung that was causing the problem, and they were monitoring that as well.
 

First X-Ray after the surgery

First X-Ray after the surgery

After talking about the surgery Dr. Gonzalez then told me how he was going to manage my care.  We spoke about how and when I would be able to make it back home to Massachusetts.  He explained that he was concerned about me traveling so soon, and told me that I first needed to be stable with my breathing, my oxygen levels and blood pressure, and that my neck needed to be healing properly before I could consider such a long plane ride home.  How long that would all take was the question that none of us knew.

Five years have passed since that time, and I will never forget how uncomfortable I was. In those first days before and after surgery the pain I was in was excruciating. It was the worst pain I had ever experienced by far, second only to the initial injury. The pain meds I was on helped for sure, but not without their side effects. I remember hallucinating and having dreams that actually had me questioning my reality; what was real and what was a dream?  I would wake up from a dream where I'd be walking, or riding my bike…...my brain still had not adjusted to my new situation. The real, horrible nightmares were when I  would  wake to find this new body I was in. Realizing that I could no longer walk, or ride my bike was the horrific reality that I just wasn't prepared to wake up to. I was now literally trapped in my body that did not move. I was not even able to do something as simple as scratching my nose.   In the hospital, when I needed to call the nurse for help I'd use a little mouthpiece (it seemed to never be positioned correctly) that hung above my mouth. It was attached to the wall, and in order to make it work I needed to depress it with my tongue. It seemed to work 50% of the time. Talk about frustration and torture. Please wake me from this nightmare!

When you think about it, who is ever prepared for such a life changing event?

One afternoon,  Dr. Gonzalez came in to tell me I had to stop taking the Opioid painkillers because my liver levels were elevated to a dangerous level and they, the medical team, were concerned. I begged him for other possible painkillers as I was still in a large amount of pain. He told me that I could now take Ibuprofen. I was really concerned, and told him that I did not think Ibuprofen would be able to take the pain away, it just wouldn’t cut it. He bluntly told me that was my only choice, and the best choice for my body.  It was a horrible few days until the swelling went down and the pain finally subsided to a tolerable level, and I was so relieved when it did.

Now that my pain was under control and my body was healing, my Physical Therapist would come in for 1 hour everyday and stretch my body. It was still strange to not have feeling at this point. However the sensation I did have was either neuropathic pain, or a sensation similar to pins and needles - quite annoying I might add. I also had a Respiratory Therapist who administered treatments to strengthen my lungs. She would have me try to breathe in and out of this contraption that had a meter on it. It was very difficult... but I tried to reach the goals they set each day. When I think back, I think It sort of kept me motivated enough to make it to the next day, and then the next. As time went on, I figured out that having those small goals for each day would help my recovery and rehab experience.

Every day the CNA’s (Certified Nurses Aides) would come into my room to reposition me in bed. They would do this every three hours in order to prevent me from having skin breakdowns. They would lather a type of oil all over my body to help my skin integrity. I always joked around about me being a salad! I did have one nurse who spoke English well enough to translate my jokes to the other aides. They would laugh, but they probably just thought I was a crazy American.

As days, and then weeks went by I did start to get little bits of feeling back.  My breathing was improving. My oxygen levels improved to almost normal, close enough that they were able to discontinue the oxygen. Slowly but surely they started removing the various monitor wires. I was getting stronger, and my body was responding to their care. It wasn't long before it was time to start talking about getting back stateside, and where I would go for my rehab. I had been in the Vall d’Hebron now for almost 4 weeks.

Back here in Massachusetts my sister was taking care of all the ungodly responsibilities of setting up the med flight and where I was actually going to be for rehab. I have to say, I feel bad for the people that she was dealing with because she is fierce when she gets her mind set on something. She arranged a med flight on a jet that would take approximately 12 to 15 hours to puddle jump from Barcelona airport to Logan Airport in Boston.

Meanwhile, my parents and I were finding out from my surgeon that he recommended Spaulding Rehab Hospital in Boston. He felt that this was the best place to go. So my sister and my mother were connecting with Spaulding and making sure that I was able to get on the list to be admitted there and coordinate the moment a room was opening so we could schedule the flight home. This coordination all took about a week and a half to finalize.  We were all so elated that we were finally able to get this plan all set and we could let everyone know the good news….that I would be finally heading home!

The care that was given to me by Vall d' Hebron was amazing. Though the hospital and its technologies seemed outdated in comparison to the US, I felt that the ICU and the Acute Care nurses and doctors were top notch. I'm so lucky to have been sent to Barcelona to be taken care of by Dr. Gonzalez and his team of healthcare professionals.

To my visitors and coworkers that were able to make it in to see me in Barcelona,  know that my spirits were elevated when I heard that you were planning on visiting, nevermind every time I saw your faces…..You all saved my soul while I was there.

The preparation for Operation Med Flight begins here.


 

Hope and Strength - My Mother's Perspective

They say that what does not kill you,  will only make you stronger........................I never dreamed that the day would come when I could actually relate to this statement.

Let me start with the fact that I have always admired those people who seem to smile and carry on when faced with life's challenges. Especially those challenges that completely alter your ability to live in a manner in which you have always been accustomed. There are those who literally crumble in the face of adversity, unable to accept the difference the "event" has made in their life. Then there are those who tend to grasp the alteration, mourn the change of how it used to be, and then slowly rebuild their life. Embracing those challenges with new hope, faith and a strong yearning to survive.

Let me share with you the story about my son Ryan....

In 2010 Ryan, then 29 years old, had started a new, very exciting venture in his life. He was offered a job working for Trek Travel, a well known Bicycle company based in Wisconsin, and had accepted the position to work for this company as their logistics Manager. This was a bicycle rider's dream come true, and the job that Ryan had dreamed of; It gave him the opportunity to work, and travel while experiencing his passion for bicycle riding. Young, single and ready to conquer the world, Ryan started working in his new role in March of 2010......little did he know what the future would bring to him.

Fast forward to March 6th, 2011, my husband and I were at my daughter’s home for a family birthday gathering in Weymouth. It is funny how you just never forget the details of where and when something terrible happens in your life .......

Randomly my daughter happened to check her phone for messages and noticed an unfamiliar Face Book message from the owners of Trek, John and Tania Burke, asking her to contact them. We immediately made the call and learned that Ryan had been in a terrible accident. At the time he was in Spain on a job assignment. The message was quite alarming as it was intended to be. Apparently Ryan had been in a very bad accident and was in a hospital in Girona Spain, soon to be transferred via Ambulance to a much larger hospital in Barcelona. We were told only that he had been in some kind of accident when riding his bike, but were unable to give details.  What we were about to learn on the fateful day would change all of our lives forever....and the person that would be most severely affected would be our son Ryan.

On this day in March, Ryan had been riding home from work. He was riding his bike on a dirt walking path. Nothing unusual for him because he had done this every day while in Spain, and he has been riding back-road paths since he was able to ride a bike without training wheels. While riding back to his hotel, he recounts that he must have hit a rock, or some kind of uneven ground that caused him to somersault over his handlebars and land, his whole body force, on his neck. Miles from home, alone on a walking path in Spain, Ryan lie motionless, knowing immediately that something catastrophic had happened to him. He never lost consciousness, he knew every minute what was happening, in severe pain as he lay, unable to move, barely able to breath, until an angel appeared. An angle by the name of Anna.

Within, what Ryan guesstimates to be about 15 minutes or so, Anna and her friend were walking nearby and came across his motionless, crumbled body. She bent down and asked him, in broken English, if he were all right. He answered her, with full awareness of his circumstance, to find the cell phone in his backpack and call for emergency assistance right away. Within what seemed to be hours the emergency help arrived. By this time Ryan was fully aware that something terrible had happened....but he had no idea of how his life was about to change. And here he was, thousands of miles from home, without family near.

Back in Boston, before we had time to even think, Ron and I were on a plane to Spain. Trek arranged the flight , the translator who would meet us at the airport in Spain, as well as all the other travel details we were so unable to take care of at such short notice. Our minds were in a state of shock. We left the party in a complete daze, went home, packed in less than 30 minutes, called a neighbor to drive us into the airport, and within two hours of the phone call in Weymouth, we were on our way to Spain with absolutely no idea of what condition Ryan was in, or what we would have to face once we were at the hospital with him.  Seven hours later we were landing in Spain, meeting with Penny, our interpreter and  guide for the next four weeks.

I am not sure I can tell the story in detail of the four weeks in Spain, and truly tell it the way we lived it. The three of us were literally living in what seemed to be a horribly, bad dream. As my husband and I made it to the hospital, we were led to a small office where we met Ryan's doctor and charge nurse, we hadn't even seen our son yet. Through our interpreter we learned the consequence of what had happened to Ryan. Again, it was as if we were in a bad dream. Words were spoken to us and we did hear what was said, but we could not process the painful words being spoken.  We were experiencing system failure,  from Information overload.

We learned that or son had been severely injured  while riding his bike home  -  he had suffered severe trauma to his spinal cord (C3,4,and 5, this part of the spinal cord is located in the neck area) that would cause him to he paralyzed from the nipple line down.  We sat in that cold office, listening to those awful words, nodding our heads and trying desperately to absorb this very disturbing, unbelievable news. News that absolutely no one ever wants to hear, nevermind a parent. In as little as 45 minutes of arriving at the hospital, we learned that our son was never going to be able to move the same again. How could something that had brought him so much pleasure since he was a little boy, take so much away. How can this be.....something is terribly wrong, this cannot be right, there is some kind of mistake.....

I will repeat: What does not kill you will only make you stronger.....and from that day in March, sitting in that cold, dank hospital office, we had no idea of the lessons we were about to learn, or the trials that lay before us. We would be pushed to our limits of acceptance,  and find new meaning in the definition of hope. Yes, today we are stronger having been through such a life event,  but I have to tell you that our strength came from our son Ryan.  It was only through his courage, tenacity, and resilience that we are here today in 2016, almost 6 years after his accident, doing just fine. Yes, Ryan is rebuilding his life, in his new body, and doing so with grace and never ending courage. Are there challenging days? Of course! But it is amazing how he has rebuilt his life and moved forward with purpose and direction.

I cannot say enough kind words about John and Tania, owners of Trek Travel and all the wonderful employees who helped us on our journey that day in March and for months (even to this day) after Ryan's accident. Not to mention the outpouring of love and support we received from family and friends. It humbles me to think of all the wonderful people in our lives, never mind the people we have met throughout this whole experience. We are truly blessed.

I have so much to tell you about Ryan and how he has embraced his new life as a Quadriplegic. Until then,  remember that at the end of the day all you need is hope and strength.....hope that it will get better..... and the strength to hold on until it does.

 

 

Picking Up Where I Left Off

After a long summer hiatus from my whole writing thing,  I'm going to pick up where I left off. I didn't realize how busy I would be over the summer and just haven't enough time to sit and write,  because writing for me isn't as simple as clicking and clacking at the keyboard. I have to use Dragon Dictation on either my computer or on my phone. As much as I want to say that Dragon is amazing, because it is,  it can still be very frustrating. Because of my speech pattern,  my accent, and the fact that dictating is still very unnatural for me,  it doesn't always scribe properly. On top of that I'm not exactly a genius when it comes to grammar. 

My summer was amazing. I rode my bike a ton, went on a couple weekend trips, enjoying beers and BBQ with friends and family, spent a lot of time reaching goals in therapy, helped organize the 2nd Annual Knobby Tire Ride and Roll, I received Oliver (the wonder dog) and went through intensive training with him at NEADS (check him out on instagram @oliverwonderdog), was a guest on a new podcast (airing this fall) and on the NBC show Give (Which is on-demand and available on their website), and so much more.   

So, with that said I'm going to continue to get posts up once a month or more going forward. Going to try and finish my rehab experience complete with experiences through my family and friends eyes. After that I'm going to try and talk about relevant topics and things that are going on in my life that revolve around my injury and my adventures a regular guy that just so happens to be a quadriplegic. 

o stay tuned in and thank you for your interest and support. Let me know what you think or if you you have a topic you want me to talk about in the future send me an email here Ryderoche@gmail.com

 

Vall d'Hebron Pt. 1

As I said in my previous blog entry, when I arrived at the ER at Vall d’Hebron, on the evening of Sunday, March 6 they pumped me full of painkillers to keep me comfortable while they ran tests, took x-rays, and prepped me for surgery. From this point on, and up to my surgery my memory is pretty shoddy. While all this is happening to me, my parents are now learning about my injury (Via Facebook, of all places), coordinating and preparing to catch a flight to Spain. Knowing very little about the severity of my injury, or how long they would need to be with me in Spain. Their biggest fear was whether I was even going to be alive.

I went into surgery the next day, March 7, and it took much longer than the surgeons expected to rebuild, and repair the damage done to my neck. To do the surgery they had to get to my spinal cord through the front left side of my neck, as the majority of the damage was done to the front side of my vertebrae. The shattered pieces of bone from my busted c4 had migrated further into my neck than they expected. At that point they also found that there were small fractures in my C3 and C5 vertebrae. In order to cement my c4 back together, and prevent other complications down the road, they needed to be sure that they found and removed all of the fragments. They bolted a plate to C3 and C5 to support my broken neck and after cementing C4 back together they placed a titanium cage around it to support the work that they had done.

I woke up in the dimly lit Intensive Care unit that was filled with beeps and alarms of the various machines I was hooked up to. Immediately I had thoughts in my head that I was going to be left to do this on my own. That my family was not going to get there for days, or at all, or not even learn I was in an accident, and I would be forgotten in Spain....  I had heard some pretty scary stories from friends about the health care given to Americans in European hospitals. Plus, I had visions of being left in a cold damp dungeon, with crazy patients, and unsanitary conditions like you see in horror movies...I could hear the evil laugh of a mad scientist. Luckily, that was far from reality!

Because of John and Tania Burke of Trek/Trek Travel, Ingrid and Penny (two of my co-workers), and a Facebook post trying to reach my parents, my mom and dad arrived at Barcelona’s Airport within 12 hours of finding out about my accident. Moments after I woke up (and had all those nightmarish thoughts) my parents entered the room, their smiles immediately put me at ease. It was that moment that I knew I'd be ok no matter what the prognosis was. The love and support that they have always given me wouldn't stop there. Little did I know that from that day forward our love and friendship would grow exponentially stronger.

We didn't realize at the time, that the next 4 weeks would be the hardest weeks we've ever had to endure together. Our patience would be tested, our hearts would be broken and repaired many times over. And most of all we would learn that just because I was the one injured didn't mean I was the only one that got hurt………..

In the next few weeks this blog will be a combination of stories from myself, and my family. All to include entries from my father's Journal during our time in Spain. Reflections from my mother about staying in contact with friends and family in the states and a neurosurgeon (He came highly recommended and was a huge help in making sure that we had all of our facts straight), and also my sister's side of the story because she was our primary point of contact here in the states.  She assisted in helping to plan my med-flight home, and where I would be for my rehab. Without all my family this story would not be complete.

 

 

The Day I Broke My 1st Bone

It was March 6th, 2011, I was in Girona, Spain on a month long project for work. My day started like the five days leading up to it. I woke up, had my two cups of café creme and a couple Pain au Chocolat (a croissant type pastry chocolate in the middle). Setting out for my commute, I threw my leg over my bike and headed to the warehouse 4ish miles away to prepare 20 or so Trek Madones for a Ride Camp trip in Mallorca, Spain. I got to the warehouse, put on my favorite working music, and started to wrench.

I finished prepping the bikes that day, had a snack, cleaned up my work area, jumped on my bike and headed out on my usual route back to the hotel. I had no idea I was moments away from my life being changed for ever. I was on a short dirt path along the Riu Ter. When I hit an  unknown object that stopped my front wheel abruptly and sent me somersaulting into the air. I landed directly on my neck about 10 to 15 feet away from my bike. When I made contact with the ground I heard what sounded like a thick tree branch snapping in half, an unforgettable noise coming from inside my neck. I did not feel my legs hit the ground. When the dust settled, my hands folded in front of my face, but I could not move them to get the dirt out of my mouth and eyes. I laid there in a fetal position for a moment hoping that feeling and movement would be restored. Hoping that it was just shock causing a moment of paralysis. My breathing was very short and my neck really hurt. With each short breath I took in dust, but couldn't cough. All I could see was the glistening of the water, and the leaves tumbling by. I tried calling for help, but all that came out was a faint whisper.

What was probably only a few moments felt as though it was an eternity.

I saw a shadow slowly creep over my right shoulder, a little elderly lady’s face came into view and said "Hola. Estás bien? ¿Que pasó?" Anna's sweet little voice was so comforting in that moment. I will never forget it. After a confusing exchange trying to explain to her that I did not speak Spanish and learning that she spoke very little English, I was able to explain to her to not move me, and that I had hurt my neck and we needed to get an ambulance there fast. After calling for help she put her leopard print jacket over me and helped me make a phone call to my friend, and coworker Ingrid to get the message to my family, and boss that I had been hurt.
 

Anna came to visit me before I left for the US

Anna came to visit me before I left for the US


While waiting for the ambulance Anna and I were exchanging small talk. She told me that it was a random circumstance that she was walking by. That she lived in Barcelona and hadn't planned on going to Girona, but her friend was on vacation and they decided to go sightseeing. She was trying her hardest to keep me alert and my mind off of what was happening. But all I could think of was whether or not I'd be able to walk, ride a bike, run around with my nieces and nephews, work, a family or wondering if I was going to have a normal life ever again. What did I do to myself and what does my future hold….

It was probably about 10 to 15 minutes before the ambulance arrived, again it felt like an eternity. The EMTs cut off my helmet my t-shirt and my backpack. They were speaking in Spanish quickly and loudly. Anna was helping me with translate back and forth with them. Good thing they were well trained and knew not to move my neck. I was afraid of all the horror stories that I'd heard about first responders in other countries. They got a neckbrace on me and put me on a backboard with the utmost care and urgency. The drive through the old Girona to Consultes Externes (the nearest ER) was bumpy and full of twists and turns.

I must of passed out at some point because I woke up in an emergency room where a young Dr. Jordy, with a thick beard and glasses, quietly and calmly ask me if I could feel the pin? I asked “What are you talking about?” He told me he was conducting a feeling and function test. He was sticking a pin into various parts of my body. And for the life of me no matter how hard I concentrated I couldn't give him an answer. He told me that I had a spinal cord injury at my Cervical 4 level and I had lost all faculties below my shoulders. I broke down and started to cry. He told me that I shouldn't give up hope and to stay positive. He then informed me that they were sending me to the best hospital in Spain, Vall d’Hebron, in Barcelona. They gave me a bunch of pain medication preparing me for the ride to Barcelona that took about an hour. Again, the EMTs did not speak English. It was an insane ride as they were driving fast and furious to get me to the ER ASAP. When I arrived they gave me some more medication and I went to sleep.  

That day, 5 years ago today, I began my journey as a new person with different abilities from you and the person next to you. But it hasn't stopped me from living a fulfilling life and being happy. This is only where my story begins.…

Tune in monthly for more blog entries that will consist of stories, spinal cord injury news, and updates of my recovery. 


Cheers!