The day I've been looking forward to for SO long is FINALLY here! I actually downloaded a countdown app and it started at 140 days. Looking at it now and seeing 15 hours left is unreal to me. I'm sitting in my apartment alone tonight (finishing the rest of the wine in my fridge) and reflecting on the past year.
I moved back to Philadelphia to finish my last semester of classes and my last year of clinic (this includes finishing my third year clinic sessions and my first rotation as a fourth year- my last and final year of school). My classmates and friends have all graduated and I came back to this busy city not only by myself, but now with a wheelchair. Needless to say, so much has changed. I've had a lot of adjusting to do and there have been a lot of rough times over the past 12 months. There were days that I didn't think I wanted to get out of bed the next day because I literally didn't think I had enough energy.
Now that I've made it past all of those obstacles, it feels like no big deal. It wasn't until in this moment that I'm realizing how strong I've been (and I'm feeling pretty proud of myself). I not only finished my required school time in Philly, but I've done it on my own (I say that a little loosely because my family and Dusty have made sure to visit every couple of weeks and I've formed great relationships with my apartment front desk staff and maintenance men). But still, I did it.
I'm thinking about how many snowstorms and rain showers I've wheeled through. The car break in that I overcame. The several fire alarms in my apartment building. Not to mention all the challenges I've faced in clinic and with patients. As difficult as it's been, I think I needed this year to build my confidence again. Instead of just listening to people tell me how inspiring and strong I am, I can look back on this year and agree with them. (I AM STRONG. Look what I did!)
I still have three more 3 month rotations and two more parts of boards before graduating in May, but I get to do all of that from home. With Dusty. With my family. With my support system. This is the excitement I was feeling as my time in Philly was coming to an end right before I got sick in August 2015. I felt like I had been waiting for January 2016 for so long and then it was all taken away from me in a matter of days. I think for that reason, it almost felt like tomorrow's move out day was never really going to happen. I had that countdown and everything, but it still didn't feel real. Well, it's feeling real now!
I'm sure I could sit here and type for hours, but I just wanted to update everyone that the day is finally here! I have my very last clinic session at The Eye Institute at school tomorrow morning and I should be home by dinner (with the help of my parents and Dusty, who will be packing up the UHaul while I'm at clinic tomorrow). It's going to be hard to say goodbye to my friends at clinic and the professors and staff I've gotten so close to, but I think everyone can agree that there is nothing like being home.
Friday, August 10, 2018
Thursday, January 18, 2018
The “bounce back gene” is still operational in 2018
As a new year begins, I think we all reflect on our past year and go over our hopes for change in the upcoming year. The obvious ones that are always on my list revolve around my diet and weight loss, but more recently it involves goals in my recovery. Regardless of what our resolutions are, we all mark January 1st as a new beginning. A fresh start, ready for something better.
Well, as many have heard, my “fresh start” isn’t looking so bright. I’ve basically been sick since New Years, which has really affected my energy and thus my workout plans. I’ve been studying nonstop for my upcoming boards in March, which has stressed me out like I can’t even explain (and it’s only going to worse leading up to test day!)
My friend, Caitlin, and her husband, Mike, were in town from Massachusetts last Friday, so I rearranged my week in order to go to lunch with them as a much deserved study break. They came to my apartment first in order to bring me coffee (Caitlin knows me so well) and to see where I live. We talked and caught up some while drinking our coffee, then decided that Caitlin would ride with me to lunch, so I could show her my hand controls and so that they could leave from lunch instead of driving all the way back to my apartment. When we got outside, it was pouring! Caitlin took my keys and said she would bring my car up to the front of the building for me.
I realized I had forgotten about the pedal guard I keep over my brake/gas and called her, thinking this must be why she was taking so long to move the car. When I called, she said she was busy “cleaning up ranch dressing off the driver’s seat.” Now, I like ranch a lot, but why on earth was there ranch on my car seat?! I don’t eat in my car and I knew I definitely didn’t have anything in the car the day before. I joked and said “that’s not mine, has someone been in my car?!”
I decided to meet her at the car (which was in the second handicapped spot at the very front of the building) instead of explain to her how to get the pedal off or how to use the hand controls. There were a bunch of napkins on the floor next to my car and as I started to get into the front seat, Mike pointed out the broken back window. Someone HAD been in my car!!! The ranch dressing must’ve came from the center console, whose contents had been flung all over the front of the vehicle. But it got worse…. my smartdrive (attachable motor) was missing from under the seat. I remembered getting home from clinic the night before in the rain and putting it under the seat because I was too worried about going through the puddles with it….and it is too heavy to place on my lap. I remember actually debating leaving it and I’m still beating myself up for being so dumb.
We went back into the building to tell the front desk (through my tears at this point) and I called my mom. I believe you’re never too old to call your parents and ask for help and if I hadn’t have had her to tell me what to do, I can’t even imagine the state I would’ve been in. My mom calmed me down and walked me through what to do next, taking pictures, calling the police, and washing my face. She took care of looking up the insurances and filing a claim while I waited SEVEN hours for the police to get there and give me a case number. It was the longest day and needless to say, I didn’t get any studying done, which just raised my stress level. Fortunately, I had Caitlin and Mike for support and I wasn’t on my way to clinic or something. Caitlin oped a bottle of wine with me and Mike went and got us lunch…I was so incredibly thankful to not be alone.
The cops couldn’t really do anything and the cameras on the building didn’t catch much. They couldn’t lift prints off my car because of the rain. So that’s that. The thieves took one of my major sources of independence and they don’t have the wrist band that makes it work or a charger, so it is completely useless to them. They really don’t gain anything, I just lose in this situation.
I had a boards prep course on campus all weekend and the window company actually met me at school during my lunch break on Saturday, so it was fixed right away. I had to pay out of pocket for the window to be fixed and then I’ll have to submit it to insurance. I’ll also have to pay the deductible for my smartdrive. My mom had the best idea of asking the rep to look into getting me a loaner until my new one arrives. These things take forever, so I hope they are able to pull that off.
There’s just so much I haven’t be able to do because of the lack of motor. I don’t think I realized how much I relied on it. I can’t park at the back of my parking lot because I can’t make it up the hill to the front of the building, especially with all my stuff from clinic. I’m having a harder time at clinic because my standing wheelchair is much heavier. I have a bracket on the back, where I would attach the motor and make it easier to get around, especially when carrying my equipment. I’ve been a lot more exhausted because of this and I’ve had to ask for help way more than I ever have.
The good things that have come from this:
- my friends and family have showed such concern and have made sure I know that they’re there for support
- the staff at my apartment building have been so amazing- someone helps me get in my car in the morning and someone else meets me in the evening to help me get in since I can’t park at the back of the lot and sometimes have to park in a non-accessible space without enough room to load or unload my chair.
- My actual car wasn’t stolen… which I’m pretty sure was the main goal. Thank God for the pedal cover and hand controls throwing the thieves off!
- I was reminded again at how much my mom does for me
I continue to beat myself up about this, wondering what I could have done differently. I just feel so violated and now I’m nervous every time I go out to the parking lot. I feel sick when I think about how much everything costs. Having to deal with all of this is not something I want to do, nor something I have time to do. My mom has had to remind me that it’s just “things” and that it isn’t the end of the world…”don’t let the bad guys win.”
So, just say a prayer that this gets taken care of, that I can get a replacement motor in a timely fashion, and that karma is coming for whoever broke into my car…
Friday, November 3, 2017
Making My Non-Accessible Apartment Accessible
I can't even begin to describe the difficulty I had apartment hunting. Finding a place in Philadelphia that was within a reasonable price range was only the beginning. Wanting a studio, a flexible number of months, and having it be wheelchair accessible made things almost impossible. I would find places online that claimed to be "wheelchair accessible," but one look at the pictures, showing a flight of stairs, proved that statement false. Some individuals even claimed their place was 100% wheelchair accessible, but disregarded the steps required to even get inside!
I finally found a place only 5 minutes from clinic (where I knew I'd be spending the majority of my time given that I only have one class left to take on campus and the rest of my time would be seeing patients). It was within my price range, a studio right across from the elevator was available, and the staff was so extremely accommodating that I knew looking anywhere else was going to be a waste of time.
I'll write a couple separate posts about living on my own: what I've learned, what would make life easier, things I've been able to do on my own, etc. so this won't be so incredibly long. So, for this post, I just wanted to touch base on how hard finding accessible housing is and what I've had to do to make my apartment work for me.
First of all, I should not be surprised that accessible housing is hard to come by. I mean, even handicapped accessible rooms in hotels aren't 100% accessible (another topic I plan to write about at some point in time). Luckily, most apartment complexes have elevators, so the obstacle of stairs is usually easily overcome. However, there is then the issue of parking, the height of cabinets, width of doorways, and layout of the bathroom (including how high the toilet is, are there any grab bars, and is it a tub that needs a tub bench or a roll in shower?)
So, let me start with the parking. There are surprisingly only two handicapped parking spaces in my complex (and neither of them have the stripped lines next to them that allow me the space to assemble my chair). I tried to brainstorm parking space ideas with the manager, but there wasn't really a set solution to ensure that no one would park in my spot (she's tried this before and people still didn't oblige even after being ticketed). There are a lot of end spaces in the back of the parking lot, like where I can park so that my driver side door opens to the aisle instead of having a curb or anything blocking the one side. I was concerned about parking down there because it's a big hill to get to the front door and if I come in after dark, it'd be difficult to see me moving through the parking lot since I'm short and there isn't a sidewalk. She ended up giving me a key to the back door. All I have to do is park down there, go in the back door and ride the elevator up to my floor instead of stopping in the lobby. Not the best answer, but it's a solution until we figure out something better. I'm just glad they are so understanding and willing to work with me, especially after the nightmares I've heard from other people with accessibility.
Next, we have the mailbox. Of course, the box corresponding to my apartment was out of my reach. This was an easy fix, though. They simply gave me one of the bottom boxes that is easy to access.
Laundry is on the top floor and there are plenty of washer and dryers on the bottom, where I can easy use them. Trash is around the corner from my room and while I really hate having to take it over there by myself because it requires putting the bag on my lap so I can push myself, I'm glad it isn't in a dumpster all the way in the parking lot or something. (and I've actually recently discovered that if my trash isn't too full, I can just loop the handles over the push-canes on the back of my chair and drag it across the hallway).
Now we get to the apartment itself.
It's a studio, so it's the perfect amount of space for me to keep up with. The floors are hardwood, which makes pushing on it easier. It's also a lot more convenient to clean with a swiffer than to try to push a big old vacuum (I have a handheld vacuum for when it's necessary).
There's a wall of storage cubbies and shelves inside the door. There were two big sliding doors that were a little difficult for me to move, so they just took them off. I can reach pretty much everything and the rod to hang all my clothes on is actually low enough for me to utilize. (Taking the doors off actually opened up the space and made it look better, so it was a win-win).
The kitchen has a "breakfast nook" counter that I use instead of a kitchen table. Maintenance lowered it to my desired height and I'm able to do all my meal prep on it since my legs fit underneath. The oven and fridge are standard (I didn't need anything different there), but I was excited about the motion censored trashcan I bought, haha. I have everything on various shelves that are at my height--my microwave, appliances, coffee maker, etc. I found a shelf that was perfect for a few of my most used utensils and I hung my fry pans on the wall. I have a reacher in the kitchen, so that I can get into the top shelves if I need to, but I don't keep much in them anyways.
I put this sandpaper-like tape on the floor under the corners of my bed so that it doesn't slide when I transfer in and out. I also use storage containers on wheels underneath to bed, so I can still utilize that space.
I have my couch and bed separated by just enough space to fit my chair and my equipment (bike and standing frame) fits behind the couch so that I can easily use them and not have to move anything around.
The bathroom was probably the most difficult part of accessibility. The door was just barely wide enough for me to fit through, so I had to get maintenance to use specific hinges that allowed the door to open wider. My apartment complex actually ordered a taller toilet and installed it before I moved in (probably because they overheard me joke that I was going to get a workout from how low the previous toilet was, haha). It's a really small space, but just big enough for my chair to get to everything. The plus side of the small space is that I don't need any grab bars (the sink is close enough and sturdy enough to use instead). I have a tub bench (with enough space in front of it for visitors to still stand in the shower) and a handheld/overhead combo shower head. I found this awesome suction cup grab bar to put in the shower and baskets to put my soaps in. I can't quite reach to put the handheld shower head back into it's holder, so I tied a ribbon around it and put a hook on the wall where I can reach. I keep a reacher next to the tub, so I can close and open the curtain all the way.
So, as you can see, it's not perfect. The important thing is that it's perfect for me. Maintenance and the front desk staff check on me regularly and help me whenever I need anything, like loading or unloading my car before and after trips back home. I'm comfortable and I'm incredibly happy. I was a little worried about living on my own because I never have before, not to mention living on my own now that I'm in a wheelchair. The independence I've found over the past several months is something I was afraid I'd never find again. Now, I can honestly say that life feels like it did before (plus a few minor hassles and the fact that everything takes a little longer).
I really didn't think I could be this happy or this independent again. It has definitely been the longest and hardest two years of my life, but I'm thankful every day for being one "step" closer to all my goals and dreams.
***When I say that "I" did something in the apartment or hung this or that, more than likely it was my mom that did it and had these brilliantly easy solutions to all my problems, so shoutout to the real superstar***
I finally found a place only 5 minutes from clinic (where I knew I'd be spending the majority of my time given that I only have one class left to take on campus and the rest of my time would be seeing patients). It was within my price range, a studio right across from the elevator was available, and the staff was so extremely accommodating that I knew looking anywhere else was going to be a waste of time.
I'll write a couple separate posts about living on my own: what I've learned, what would make life easier, things I've been able to do on my own, etc. so this won't be so incredibly long. So, for this post, I just wanted to touch base on how hard finding accessible housing is and what I've had to do to make my apartment work for me.
First of all, I should not be surprised that accessible housing is hard to come by. I mean, even handicapped accessible rooms in hotels aren't 100% accessible (another topic I plan to write about at some point in time). Luckily, most apartment complexes have elevators, so the obstacle of stairs is usually easily overcome. However, there is then the issue of parking, the height of cabinets, width of doorways, and layout of the bathroom (including how high the toilet is, are there any grab bars, and is it a tub that needs a tub bench or a roll in shower?)
So, let me start with the parking. There are surprisingly only two handicapped parking spaces in my complex (and neither of them have the stripped lines next to them that allow me the space to assemble my chair). I tried to brainstorm parking space ideas with the manager, but there wasn't really a set solution to ensure that no one would park in my spot (she's tried this before and people still didn't oblige even after being ticketed). There are a lot of end spaces in the back of the parking lot, like where I can park so that my driver side door opens to the aisle instead of having a curb or anything blocking the one side. I was concerned about parking down there because it's a big hill to get to the front door and if I come in after dark, it'd be difficult to see me moving through the parking lot since I'm short and there isn't a sidewalk. She ended up giving me a key to the back door. All I have to do is park down there, go in the back door and ride the elevator up to my floor instead of stopping in the lobby. Not the best answer, but it's a solution until we figure out something better. I'm just glad they are so understanding and willing to work with me, especially after the nightmares I've heard from other people with accessibility.
Next, we have the mailbox. Of course, the box corresponding to my apartment was out of my reach. This was an easy fix, though. They simply gave me one of the bottom boxes that is easy to access.
Laundry is on the top floor and there are plenty of washer and dryers on the bottom, where I can easy use them. Trash is around the corner from my room and while I really hate having to take it over there by myself because it requires putting the bag on my lap so I can push myself, I'm glad it isn't in a dumpster all the way in the parking lot or something. (and I've actually recently discovered that if my trash isn't too full, I can just loop the handles over the push-canes on the back of my chair and drag it across the hallway).
Now we get to the apartment itself.
It's a studio, so it's the perfect amount of space for me to keep up with. The floors are hardwood, which makes pushing on it easier. It's also a lot more convenient to clean with a swiffer than to try to push a big old vacuum (I have a handheld vacuum for when it's necessary).
There's a wall of storage cubbies and shelves inside the door. There were two big sliding doors that were a little difficult for me to move, so they just took them off. I can reach pretty much everything and the rod to hang all my clothes on is actually low enough for me to utilize. (Taking the doors off actually opened up the space and made it look better, so it was a win-win).
The kitchen has a "breakfast nook" counter that I use instead of a kitchen table. Maintenance lowered it to my desired height and I'm able to do all my meal prep on it since my legs fit underneath. The oven and fridge are standard (I didn't need anything different there), but I was excited about the motion censored trashcan I bought, haha. I have everything on various shelves that are at my height--my microwave, appliances, coffee maker, etc. I found a shelf that was perfect for a few of my most used utensils and I hung my fry pans on the wall. I have a reacher in the kitchen, so that I can get into the top shelves if I need to, but I don't keep much in them anyways.
I put this sandpaper-like tape on the floor under the corners of my bed so that it doesn't slide when I transfer in and out. I also use storage containers on wheels underneath to bed, so I can still utilize that space.
I have my couch and bed separated by just enough space to fit my chair and my equipment (bike and standing frame) fits behind the couch so that I can easily use them and not have to move anything around.
The bathroom was probably the most difficult part of accessibility. The door was just barely wide enough for me to fit through, so I had to get maintenance to use specific hinges that allowed the door to open wider. My apartment complex actually ordered a taller toilet and installed it before I moved in (probably because they overheard me joke that I was going to get a workout from how low the previous toilet was, haha). It's a really small space, but just big enough for my chair to get to everything. The plus side of the small space is that I don't need any grab bars (the sink is close enough and sturdy enough to use instead). I have a tub bench (with enough space in front of it for visitors to still stand in the shower) and a handheld/overhead combo shower head. I found this awesome suction cup grab bar to put in the shower and baskets to put my soaps in. I can't quite reach to put the handheld shower head back into it's holder, so I tied a ribbon around it and put a hook on the wall where I can reach. I keep a reacher next to the tub, so I can close and open the curtain all the way.
I really didn't think I could be this happy or this independent again. It has definitely been the longest and hardest two years of my life, but I'm thankful every day for being one "step" closer to all my goals and dreams.
***When I say that "I" did something in the apartment or hung this or that, more than likely it was my mom that did it and had these brilliantly easy solutions to all my problems, so shoutout to the real superstar***
Thursday, November 2, 2017
One hell of a ride
Two years ago today our family started on a journey that we were totally unprepared to embark on. Most journeys that we have taken as a family begin with me (the mom) doing a ton of research so we know everything that we need to know to have a safe and enjoyable trip. This "trip" began without any notification and absolutely no preparation on my part.
Let me back up...August 29, 2015, Kelly called me to tell me that she wasn't feeling well. Nurses are known for being hard on their children when they are ill. I'm not an exception to that! I even made James pitch a game with a broken arm that I was sure he was being over dramatic about. Therefore, when Kelly called with complaints of fever, aching and headache I told her to go to bed and she'd be fine in the morning. It took 3 days for me to become alarmed that something may be going on that she needed to be seen by a doctor for. Surely it was just a bug that might require some antibiotics or flu medicine to cure. I had NO IDEA!
I watched my husband cry out of frustration that he couldn't save his little girl. I saw my son punch walls because he was so angry that she had to go through this. I stood in awe of the love that Dusty showed her as he played pandora for her all night so she wouldn't wake up afraid. I stayed awake at night so afraid that her life could end at any moment. This wasn't a journey that I was ready to take.
Two years ago today, Kelly crashed in the ICU of Winchester Medical Center and was sent to UVA for treatment of what would later be identified as ADEM (Acute Disseminating Encephelo Myelitis), an auto immune response to a virus that was most likely caused by a mosquito. Her brain, spinal cord and every other nerve in her body was attacked by her own immune system leaving her paralyzed from the nose down.
She has since made amazing progress and is currently living independently in Philadelphia while she finishes her dream of becoming an optometrist. She hit a speed bump (disguised as a mountain) and plugged forward to get where she needed to be.
There were days that I wondered why she/we had to go through this. What good could possible come of such a horrific experience? Why my daughter?
I don't have answers to those questions, but I do know that most people would not have handled these past two years with as much grace and determination as Kelly has. Most people wouldn't have had the ability to make friends with people all over the world and encourage them in their circumstances while fighting her own battles. Kelly has an unbelievable way of making people feel like they have known her for a lifetime. She has "gathered" some remarkable people over her lifetime.
This wasn't a journey that we chose to embark on, but it is a journey that I learned to be thankful for. I look back and I am overwhelmed at how far Kelly has come, but I am also overwhelmed at how much we have all grown. I would never choose this for any of us, but I am able to see some of the good things that have come out of it. Don't get me wrong...I would give up anything to go back 2 years and slap that damn mosquito!
We have met some of the most incredible people. Therapists, Doctors, Friends, other patients, SCI (spinal cord injury) survivors, volunteers, nurses, etc....I can't even list them all!
Kelly is still Kelly. Driven, focused, friendly, energetic, did I say driven...she just gets places on wheels instead of on feet. She won't let something like her legs not moving stop her from getting where she wants to go.
I think, if someone asked me "why did this have to happen to her" my answer would be simply, because she has the ability to make the most of it. She has and will continue to make a difference in the SCI community. She will make most of us think twice about complaining about a sore back or an ingrown toenail. She will fight for people with disabilities to be heard in a world that isn't equipped to handle all their needs. Kelly will make an impact on the world because she will not fade into the background. No, she will speak out and stand tall for all to see where she has been and where she is going.
The last two years have been one hell of a ride, but I am so thankful for those that rode the waves beside us. I'm even more thankful for all of those that helped us tread water when we were drowning. Mostly, I am thankful that I am the mom to this beautiful girl that won't let anything get in the way of her dreams.
Let me back up...August 29, 2015, Kelly called me to tell me that she wasn't feeling well. Nurses are known for being hard on their children when they are ill. I'm not an exception to that! I even made James pitch a game with a broken arm that I was sure he was being over dramatic about. Therefore, when Kelly called with complaints of fever, aching and headache I told her to go to bed and she'd be fine in the morning. It took 3 days for me to become alarmed that something may be going on that she needed to be seen by a doctor for. Surely it was just a bug that might require some antibiotics or flu medicine to cure. I had NO IDEA!
I watched my husband cry out of frustration that he couldn't save his little girl. I saw my son punch walls because he was so angry that she had to go through this. I stood in awe of the love that Dusty showed her as he played pandora for her all night so she wouldn't wake up afraid. I stayed awake at night so afraid that her life could end at any moment. This wasn't a journey that I was ready to take.
Two years ago today, Kelly crashed in the ICU of Winchester Medical Center and was sent to UVA for treatment of what would later be identified as ADEM (Acute Disseminating Encephelo Myelitis), an auto immune response to a virus that was most likely caused by a mosquito. Her brain, spinal cord and every other nerve in her body was attacked by her own immune system leaving her paralyzed from the nose down.
She has since made amazing progress and is currently living independently in Philadelphia while she finishes her dream of becoming an optometrist. She hit a speed bump (disguised as a mountain) and plugged forward to get where she needed to be.
There were days that I wondered why she/we had to go through this. What good could possible come of such a horrific experience? Why my daughter?
I don't have answers to those questions, but I do know that most people would not have handled these past two years with as much grace and determination as Kelly has. Most people wouldn't have had the ability to make friends with people all over the world and encourage them in their circumstances while fighting her own battles. Kelly has an unbelievable way of making people feel like they have known her for a lifetime. She has "gathered" some remarkable people over her lifetime.
This wasn't a journey that we chose to embark on, but it is a journey that I learned to be thankful for. I look back and I am overwhelmed at how far Kelly has come, but I am also overwhelmed at how much we have all grown. I would never choose this for any of us, but I am able to see some of the good things that have come out of it. Don't get me wrong...I would give up anything to go back 2 years and slap that damn mosquito!
We have met some of the most incredible people. Therapists, Doctors, Friends, other patients, SCI (spinal cord injury) survivors, volunteers, nurses, etc....I can't even list them all!
Kelly is still Kelly. Driven, focused, friendly, energetic, did I say driven...she just gets places on wheels instead of on feet. She won't let something like her legs not moving stop her from getting where she wants to go.
I think, if someone asked me "why did this have to happen to her" my answer would be simply, because she has the ability to make the most of it. She has and will continue to make a difference in the SCI community. She will make most of us think twice about complaining about a sore back or an ingrown toenail. She will fight for people with disabilities to be heard in a world that isn't equipped to handle all their needs. Kelly will make an impact on the world because she will not fade into the background. No, she will speak out and stand tall for all to see where she has been and where she is going.
The last two years have been one hell of a ride, but I am so thankful for those that rode the waves beside us. I'm even more thankful for all of those that helped us tread water when we were drowning. Mostly, I am thankful that I am the mom to this beautiful girl that won't let anything get in the way of her dreams.
Monday, September 4, 2017
Happy Second Life Day to Me
It's a weird phrase: "life day," but that's what everyone calls it..and since I don't have an "accident-iversary," the term "life day" will have to do. At times, I wish it was just a single day...just 24 hours to reflect upon, celebrate, or just get it over with and not think about for the next 364 days. Instead, I have a whole week. A whole week to remember the hell I went through. A whole week to wonder if I could've done something to change the outcome...gone to the doctor quicker, insist on different tests to be run, anything to stop that virus from attacking every single bit of me (more accurately, stop the virus before my body decided to attack itself). But I'm not really big on "what-ifs." Luckily. It's still a strange week, though. I don't want to say it's a "sad" week or a "celebratory" week, because it isn't really either. It's just strange.
It's upsetting to think about how many things could be different if none of this had happened, but it's also amazing to think back to how far I've come...and then the obvious thought of how I actually almost died on this day two years ago. That's when I'm glad that my short term memory was lost from all the brain swelling. I don't remember the worst of it all (unfortunately, my friends and family do), but I don't necessarily have bad memories or painful memories of this day or this week. I just know what everyone told me happened (and, trust me, that's enough).
I know that on this day two years ago, I crashed. They almost lost me and I had to be put on the ventilator...I couldn't breathe on my own. That thought alone gives me goosebumps. I remember the process of learning how to breathe again and trying to get off that ventilator and it was one of the hardest things I've ever done, but I don't remember my last breaths or the events that led up to needing a machine to do something for me that seems so easy and effortless.
Even just thinking about this time last year is weird. Things had changed so much in those first 365 days, but I think the changes in the last 365 days may be even more significant. That first year included milestones like: being able to feed myself, no longer being in a hospital, dressing myself, getting in and out of a car, etc. The second year has consisted of: learning how to drive, loading my own chair in and out of the car, finishing all my courses and starting back to clinic (seeing patients again!!), and living on my OWN in Philadelphia. The first year was me going from being so incredibly sick and learning how to move different parts of my body again--getting used to my new "normal." But this year has been about being "me" again. About being happy again. About not having anything holding me back anymore.
I can honestly say that I'm happy now. I tried to fake it before and put on the smile that everyone wanted to see, but I was sad. I wasn't back at school. I wasn't graduating with my friends. And I didn't feel independent. Now, I'm doing literally everything I did before. It may not be as graceful and certainly not in a timely fashion, but I'm doing it. My whole outlook on life and how I viewed my situation changed. I think that's how it is with any life changing event. I went from being in denial, saying I didn't need to order a wheelchair because I wasn't going to need it. Or that I didn't need to learn how to drive with hand controls because my legs were going to start working. To, now, figuring out ways to make my current situation work. I finally decided that I wasn't going to waste any more time waiting for things to improve. I was going to discover how to accomplish the things I wanted to now, in whatever way I needed to get it done. And it has worked (so far at least). I've always been afraid of failure. Afraid of not getting things right on the first try. But now, I realize that it doesn't matter how many times I have to do it, all that matters in the end is that I was successful. Don't get me wrong, I have a lot more to accomplish and a lot more to figure out. I hope that in 364 days, I'm able to sit down and write another blog about how much greater things are and how the difference between years one and two seem so small compared to years two and three.
I'll say it again, it's a marathon, not a sprint. This past year has gotten me a lot close to that finish line. My recovery isn't just physical. It has involved a lot more mental and emotional development than anything and I know the race isn't over yet.
It's upsetting to think about how many things could be different if none of this had happened, but it's also amazing to think back to how far I've come...and then the obvious thought of how I actually almost died on this day two years ago. That's when I'm glad that my short term memory was lost from all the brain swelling. I don't remember the worst of it all (unfortunately, my friends and family do), but I don't necessarily have bad memories or painful memories of this day or this week. I just know what everyone told me happened (and, trust me, that's enough).
I know that on this day two years ago, I crashed. They almost lost me and I had to be put on the ventilator...I couldn't breathe on my own. That thought alone gives me goosebumps. I remember the process of learning how to breathe again and trying to get off that ventilator and it was one of the hardest things I've ever done, but I don't remember my last breaths or the events that led up to needing a machine to do something for me that seems so easy and effortless.
Even just thinking about this time last year is weird. Things had changed so much in those first 365 days, but I think the changes in the last 365 days may be even more significant. That first year included milestones like: being able to feed myself, no longer being in a hospital, dressing myself, getting in and out of a car, etc. The second year has consisted of: learning how to drive, loading my own chair in and out of the car, finishing all my courses and starting back to clinic (seeing patients again!!), and living on my OWN in Philadelphia. The first year was me going from being so incredibly sick and learning how to move different parts of my body again--getting used to my new "normal." But this year has been about being "me" again. About being happy again. About not having anything holding me back anymore.
I can honestly say that I'm happy now. I tried to fake it before and put on the smile that everyone wanted to see, but I was sad. I wasn't back at school. I wasn't graduating with my friends. And I didn't feel independent. Now, I'm doing literally everything I did before. It may not be as graceful and certainly not in a timely fashion, but I'm doing it. My whole outlook on life and how I viewed my situation changed. I think that's how it is with any life changing event. I went from being in denial, saying I didn't need to order a wheelchair because I wasn't going to need it. Or that I didn't need to learn how to drive with hand controls because my legs were going to start working. To, now, figuring out ways to make my current situation work. I finally decided that I wasn't going to waste any more time waiting for things to improve. I was going to discover how to accomplish the things I wanted to now, in whatever way I needed to get it done. And it has worked (so far at least). I've always been afraid of failure. Afraid of not getting things right on the first try. But now, I realize that it doesn't matter how many times I have to do it, all that matters in the end is that I was successful. Don't get me wrong, I have a lot more to accomplish and a lot more to figure out. I hope that in 364 days, I'm able to sit down and write another blog about how much greater things are and how the difference between years one and two seem so small compared to years two and three.
I'll say it again, it's a marathon, not a sprint. This past year has gotten me a lot close to that finish line. My recovery isn't just physical. It has involved a lot more mental and emotional development than anything and I know the race isn't over yet.
Friday, August 18, 2017
Starting a New Chapter
Tomorrow is the day. After almost exactly two years (technically, just one week short of being two years), I am moving back to Philadelphia. I was in my third year of optometry school- my last semester of classes before starting to study for boards and go out on rotations. I had been looking forward to that time in my life for so long. Of course, when we plan things in life, God laughs. Needless to say, things didn't turn out the way I had envisioned.
Out of nowhere, I got a virus that paralyzed me from the nose down and put me on the ventilator all in a mere 5 days. I was in various ICU's and rehab centers for the next 4 months, learning how to breathe on my own, talk again, and do daily functions like get dressed and feed myself. Many of you remember my posts about all of those struggles and small victories...if not, you can look back at the beginning of my blog just to see how much I had lost and how much I had to learn. Sometimes, I have to reread some of those posts in order to remind myself what I've accomplished.
With it being the night before the big move, I have a lot of things running through my head. There's definitely a lot of anticipation and excitement, but I'm also pretty nervous. I'm worried about things like: what if I can't find a handicapped parking space every night? what if I fall on the ground since I haven't perfected my floor transfers yet? what if things take me way longer than I think they will and I'm late to clinic every single day? how am I going to pump my own gas if there isn't someone at the station to help me?
I could keep myself up all night thinking of everything that could go wrong, so I'm trying to think about the excitement of being independent again instead. In all honesty, I've never ever lived completely on my own. In college and grad school, I always had at least one roommate, if not two, three or even four. I've never really been one to like being alone for long periods of time, but I think with all that has changed, maybe that has too. Not that I don't want to be around other people, but I think that the achievement of doing everything 100% on my own is the next thing on my list. It means that there isn't anything I can't do. It means that I've made it...I've gone from not being able to do anything at all (not even breathe on my own) to being able to live in a studio apartment in Philadelphia and finish my last year of optometry school independently.
I'm also reflecting on a lot this evening. I'm looking back over this summer as it comes to a close. I've gone to the beach, a few weddings with friends, countless breweries and wineries, learned how to adaptive sail, gone indoor skydiving, and attended another adaptive surf event with Life Rolls On. I'm also looking back on how much has changed over the past year, and reflecting on what life was like the last time I lived in Philadelphia. I can't wait to tell my friends and family that they can visit me in Philly again, but not in a hospital, like the last time they came to town! I'm also hoping that I can get involved with local adaptive sports programs and possibly visit newly injured patients at the rehab facility I attended.
I'm pushing back the feelings of anxiety and stress in order to focus on the possibility of what all I can accomplish next. There's no denying that I've been dealt a pretty crappy hand, but I'd like to think that I took it and made the most out of it. I didn't let things stop me, at least not for long. I used to think it was a little annoying when people called me an "inspiration." I know that sounds ungrateful, but when you hear it enough, it almost doesn't sound like a compliment anymore. I could be in the grocery store and a stranger would tell me I was inspiring just for getting out of my house and completing my daily tasks. I've spent a lot of time thinking about how to handle these comments. I think there's a difference between just saying "you're an inspiration" and saying "you inspire me to ___." When I hear it now, I try to remind myself it's a compliment and that if I inspire someone to do anything positive, then that's a good thing. Heck, I've accomplished a lot and if I was looking at my situation from the outside, I'd be the one saying I was inspired. I hope that after this move and after getting back into clinic, people with be inspired to do something...anything. If I can do all of this, other people can too.
Out of nowhere, I got a virus that paralyzed me from the nose down and put me on the ventilator all in a mere 5 days. I was in various ICU's and rehab centers for the next 4 months, learning how to breathe on my own, talk again, and do daily functions like get dressed and feed myself. Many of you remember my posts about all of those struggles and small victories...if not, you can look back at the beginning of my blog just to see how much I had lost and how much I had to learn. Sometimes, I have to reread some of those posts in order to remind myself what I've accomplished.
With it being the night before the big move, I have a lot of things running through my head. There's definitely a lot of anticipation and excitement, but I'm also pretty nervous. I'm worried about things like: what if I can't find a handicapped parking space every night? what if I fall on the ground since I haven't perfected my floor transfers yet? what if things take me way longer than I think they will and I'm late to clinic every single day? how am I going to pump my own gas if there isn't someone at the station to help me?
I could keep myself up all night thinking of everything that could go wrong, so I'm trying to think about the excitement of being independent again instead. In all honesty, I've never ever lived completely on my own. In college and grad school, I always had at least one roommate, if not two, three or even four. I've never really been one to like being alone for long periods of time, but I think with all that has changed, maybe that has too. Not that I don't want to be around other people, but I think that the achievement of doing everything 100% on my own is the next thing on my list. It means that there isn't anything I can't do. It means that I've made it...I've gone from not being able to do anything at all (not even breathe on my own) to being able to live in a studio apartment in Philadelphia and finish my last year of optometry school independently.
I'm also reflecting on a lot this evening. I'm looking back over this summer as it comes to a close. I've gone to the beach, a few weddings with friends, countless breweries and wineries, learned how to adaptive sail, gone indoor skydiving, and attended another adaptive surf event with Life Rolls On. I'm also looking back on how much has changed over the past year, and reflecting on what life was like the last time I lived in Philadelphia. I can't wait to tell my friends and family that they can visit me in Philly again, but not in a hospital, like the last time they came to town! I'm also hoping that I can get involved with local adaptive sports programs and possibly visit newly injured patients at the rehab facility I attended.
I'm pushing back the feelings of anxiety and stress in order to focus on the possibility of what all I can accomplish next. There's no denying that I've been dealt a pretty crappy hand, but I'd like to think that I took it and made the most out of it. I didn't let things stop me, at least not for long. I used to think it was a little annoying when people called me an "inspiration." I know that sounds ungrateful, but when you hear it enough, it almost doesn't sound like a compliment anymore. I could be in the grocery store and a stranger would tell me I was inspiring just for getting out of my house and completing my daily tasks. I've spent a lot of time thinking about how to handle these comments. I think there's a difference between just saying "you're an inspiration" and saying "you inspire me to ___." When I hear it now, I try to remind myself it's a compliment and that if I inspire someone to do anything positive, then that's a good thing. Heck, I've accomplished a lot and if I was looking at my situation from the outside, I'd be the one saying I was inspired. I hope that after this move and after getting back into clinic, people with be inspired to do something...anything. If I can do all of this, other people can too.
Tuesday, August 8, 2017
Where is the "support" in "support groups" ??
When something traumatic happens, talking about it and sorting through those feeling is pretty vital to getting through it. Not everyone can do it right away and everyone processes it differently, but one thing I've learned is that it definitely doesn't help to keep your emotions bottled up inside.
I think I've mentioned before how my blog started. There was a psychologist at the hospital where I did my inpatient rehab. Everyone was required to have an evaluation from her and if they needed to, they could schedule appointments to sort through whatever feelings and troubles they were experiencing. I realized the importance of having someone to talk to, but I just didn't really connect with this individual. Instead of wanting to confide in her, I felt like she was prying and wanted to know unnecessary details of my life. She reminded me of the psychologists you see on tv shows sitting on a couch, with their glasses halfway down their nose...nodding with an occasional "uh huh, I see" and then asking "and how does that make you feel?" It was all too much for me. Plus, I had enough visitors that I wasn't having any trouble talking to people about how I felt and crying when I needed to.
Anyways, Dusty suggested that I start a blog because people at home would like to have updates on how I was doing and I could also use it as an outlet for my feelings...like a viral diary almost, haha. It was very therapeutic for me to write things out and to have it documented in order to look back on. I made a lot of progress in a short amount of time, so as soon as it started to slow down, I started to get discouraged and lose track of how far I'd come.
I spoke at a company Christmas party in December, titling my speech "Celebrating Small Victories." In order to write the speech, I went back through my blog posts. I spent hours reading about how I got to eat real food for the first time, when I was able to cut my sausage patty at breakfast, and the great success of finally getting my contacts in and out by myself. It reminded me of what a great tool having my blog was, especially when I didn't want to open up to a trained professional. It's not for everyone, and when it is, you need to find someone you feel comfortable with. If not, then find another outlet like I did with writing.
I've joined a few SCI support groups online recently and it's been eye opening for a number of reasons. Let me start with some the positives:
It's a totally different point of view when able to talk to someone who has gone through a similar experience as you and faces the same struggles on a regular basis. One of the greatest things I've done is get involved in various adaptive sports not only because I love adventure and trying new things, but I've made some incredible relationships. There's just something about being with other people that have had an SCI or are in a wheelchair. It's like that with anything- it's just easier to talk to someone that has been through it as well.
I like these groups because you don't feel uncomfortable asking others about personal struggles or posting pictures about a possible sore, wondering if you should seek medical attention or figure out a home remedy. I've learned more from other patients at therapy or other individuals in these support groups than any doctor's office or institution I've been to.
I've also made new friends. Some that I've been lucky enough to unite with in person, others that I get to talk to from a distance.
I know there are a lot more benefits to groups like this, but lately, all I've been seeing are the negatives. I've seen so much criticism and downright cyber bullying...in support groups!! I really can't wrap my head around it.
There was a post from a girl asking for tips on how to make camping easier because she hadn't been in her wheelchair before. A lot of people offered advice, like what type of air mattress to use and the brand of tent they prefer, but a guy actually posted "simple, don't go. You're in a wheelchair." I can't make this stuff up.
I've seen so many threads like this and it is such a shame. Last night is what pushed me over the edge. A man posted a video of himself doing a 35lb leg curl. His injury level is similar to mine and I know I can't even do a leg curl with 0lbs, so this was pretty remarkable. He had gone to see a reflexologist and licensed massage therapist who is known for helping spinal cord patients regain voluntary movement...some after 20+ years! I don't really understand it, but he does five sessions/one week of therapy and somehow, the combination of touching the lower back and following his therapy regimen, people are finding new movement. From what I understand, people still have to put in the work and follow their exercise program, but there are individuals that are now walking after several years of nothing. There's a wide range of progress and success, just like with anything, but you can't deny how amazing the progress videos are. Regardless, people are given hope....hope they haven't found in a long time. Obviously, because there isn't any documented research or clinical trials explaining why this man's therapy program works, there is a lot of skepticism. That aside, this man simply wanted to post his progress. Something people do in these groups everyday. It gives each other hope and encouragement and also allows people to support the person posting and tell them to keep up the hard work. In my opinion, this is how a support group should work. Emphasis on the word support. (Am I wrong?)
There was a woman that kept commenting "scam!!" "scam! This guy is teaming up with the therapist to take everyone's money!" It was so uncalled for and really got under my skin. The man that had posted the original video tried to explain that a few members of the group knew he was getting this therapy and he wanted to share the positive results he was seeing after just one day. He even said he couldn't really explain what the therapist had done, but he was already grateful he decided to go. He tried to reassure this woman that he wasn't teaming up and forming a scam, just trying to encourage others, but the cyber bullying continued. I'm usually not one to comment on different threads with my own opinion. If I say anything, I try to just be encouraging, saying something nice or I'll post things that have helped me in the past. In no way would I ever send out accusations or criticism, questioning people's intentions. That's when you chose to just scroll down the page..
I commented, telling the guy that I thought his progress was amazing and if seeing this therapist is what got him there, then I don't see why people would scream "scam." I told him that we should applaud him for his hard work and encourage him to keep going. I got a lot of positive feedback for this and the guy was really thankful, because he didn't understand all the negativity and bitterness he was receiving.
After reading that this woman doesn't have an SCI and isn't in a wheelchair herself, I commented this: "If this hasn't happened to you, then I really don't think you have the right to act like this when someone was just posting their progress. Progress is progress and I think the video speaks for itself. There are people out there scamming others and it's a shame, but this guy posted his own progress to a SUPPORT group for SUPPORT. If you don't like or agree with something, scroll past it but don't rain on someone else's parade. Those that have and are paralyzed will do anything to get back what they have lost and I don't think you have a right to take away that hope"
The man that posted the video replied by saying "very well said and much appreciated. Thanks for your understanding and compassion. I thought that's what this site was all about but I guess not everyone feels that way."
I really just can't understand why people feel compelled to say anything negative in these groups. Like I said, where is the support in support groups? Posting criticism or negativity creates a different atmosphere. It starts an environment where people don't feel comfortable posting anything because they don't want to be called out. This isn't how we should treat each other...ever, but especially not when we are supposedly going through the same things. I mean, when someone posts about a wound that they don't know how to handle, seeking advice and prayers, DO NOT comment about how you don't understand why they let it get that bad. What good is that comment accomplishing besides embarrassing the person that wanted help? It's heartbreaking. I really hate the way technology has allowed us to hide behind our computers, saying anything and everything that we would never dream about saying to people in person.
We really need to put ourselves in one another's shoes every once in awhile...and please, remind yourself of what you teach your children- "don't say anything at all if you can't say anything nice."
I think I've mentioned before how my blog started. There was a psychologist at the hospital where I did my inpatient rehab. Everyone was required to have an evaluation from her and if they needed to, they could schedule appointments to sort through whatever feelings and troubles they were experiencing. I realized the importance of having someone to talk to, but I just didn't really connect with this individual. Instead of wanting to confide in her, I felt like she was prying and wanted to know unnecessary details of my life. She reminded me of the psychologists you see on tv shows sitting on a couch, with their glasses halfway down their nose...nodding with an occasional "uh huh, I see" and then asking "and how does that make you feel?" It was all too much for me. Plus, I had enough visitors that I wasn't having any trouble talking to people about how I felt and crying when I needed to.
Anyways, Dusty suggested that I start a blog because people at home would like to have updates on how I was doing and I could also use it as an outlet for my feelings...like a viral diary almost, haha. It was very therapeutic for me to write things out and to have it documented in order to look back on. I made a lot of progress in a short amount of time, so as soon as it started to slow down, I started to get discouraged and lose track of how far I'd come.
I spoke at a company Christmas party in December, titling my speech "Celebrating Small Victories." In order to write the speech, I went back through my blog posts. I spent hours reading about how I got to eat real food for the first time, when I was able to cut my sausage patty at breakfast, and the great success of finally getting my contacts in and out by myself. It reminded me of what a great tool having my blog was, especially when I didn't want to open up to a trained professional. It's not for everyone, and when it is, you need to find someone you feel comfortable with. If not, then find another outlet like I did with writing.
I've joined a few SCI support groups online recently and it's been eye opening for a number of reasons. Let me start with some the positives:
It's a totally different point of view when able to talk to someone who has gone through a similar experience as you and faces the same struggles on a regular basis. One of the greatest things I've done is get involved in various adaptive sports not only because I love adventure and trying new things, but I've made some incredible relationships. There's just something about being with other people that have had an SCI or are in a wheelchair. It's like that with anything- it's just easier to talk to someone that has been through it as well.
I like these groups because you don't feel uncomfortable asking others about personal struggles or posting pictures about a possible sore, wondering if you should seek medical attention or figure out a home remedy. I've learned more from other patients at therapy or other individuals in these support groups than any doctor's office or institution I've been to.
I've also made new friends. Some that I've been lucky enough to unite with in person, others that I get to talk to from a distance.
I know there are a lot more benefits to groups like this, but lately, all I've been seeing are the negatives. I've seen so much criticism and downright cyber bullying...in support groups!! I really can't wrap my head around it.
There was a post from a girl asking for tips on how to make camping easier because she hadn't been in her wheelchair before. A lot of people offered advice, like what type of air mattress to use and the brand of tent they prefer, but a guy actually posted "simple, don't go. You're in a wheelchair." I can't make this stuff up.
I've seen so many threads like this and it is such a shame. Last night is what pushed me over the edge. A man posted a video of himself doing a 35lb leg curl. His injury level is similar to mine and I know I can't even do a leg curl with 0lbs, so this was pretty remarkable. He had gone to see a reflexologist and licensed massage therapist who is known for helping spinal cord patients regain voluntary movement...some after 20+ years! I don't really understand it, but he does five sessions/one week of therapy and somehow, the combination of touching the lower back and following his therapy regimen, people are finding new movement. From what I understand, people still have to put in the work and follow their exercise program, but there are individuals that are now walking after several years of nothing. There's a wide range of progress and success, just like with anything, but you can't deny how amazing the progress videos are. Regardless, people are given hope....hope they haven't found in a long time. Obviously, because there isn't any documented research or clinical trials explaining why this man's therapy program works, there is a lot of skepticism. That aside, this man simply wanted to post his progress. Something people do in these groups everyday. It gives each other hope and encouragement and also allows people to support the person posting and tell them to keep up the hard work. In my opinion, this is how a support group should work. Emphasis on the word support. (Am I wrong?)
There was a woman that kept commenting "scam!!" "scam! This guy is teaming up with the therapist to take everyone's money!" It was so uncalled for and really got under my skin. The man that had posted the original video tried to explain that a few members of the group knew he was getting this therapy and he wanted to share the positive results he was seeing after just one day. He even said he couldn't really explain what the therapist had done, but he was already grateful he decided to go. He tried to reassure this woman that he wasn't teaming up and forming a scam, just trying to encourage others, but the cyber bullying continued. I'm usually not one to comment on different threads with my own opinion. If I say anything, I try to just be encouraging, saying something nice or I'll post things that have helped me in the past. In no way would I ever send out accusations or criticism, questioning people's intentions. That's when you chose to just scroll down the page..
I commented, telling the guy that I thought his progress was amazing and if seeing this therapist is what got him there, then I don't see why people would scream "scam." I told him that we should applaud him for his hard work and encourage him to keep going. I got a lot of positive feedback for this and the guy was really thankful, because he didn't understand all the negativity and bitterness he was receiving.
After reading that this woman doesn't have an SCI and isn't in a wheelchair herself, I commented this: "If this hasn't happened to you, then I really don't think you have the right to act like this when someone was just posting their progress. Progress is progress and I think the video speaks for itself. There are people out there scamming others and it's a shame, but this guy posted his own progress to a SUPPORT group for SUPPORT. If you don't like or agree with something, scroll past it but don't rain on someone else's parade. Those that have and are paralyzed will do anything to get back what they have lost and I don't think you have a right to take away that hope"
The man that posted the video replied by saying "very well said and much appreciated. Thanks for your understanding and compassion. I thought that's what this site was all about but I guess not everyone feels that way."
I really just can't understand why people feel compelled to say anything negative in these groups. Like I said, where is the support in support groups? Posting criticism or negativity creates a different atmosphere. It starts an environment where people don't feel comfortable posting anything because they don't want to be called out. This isn't how we should treat each other...ever, but especially not when we are supposedly going through the same things. I mean, when someone posts about a wound that they don't know how to handle, seeking advice and prayers, DO NOT comment about how you don't understand why they let it get that bad. What good is that comment accomplishing besides embarrassing the person that wanted help? It's heartbreaking. I really hate the way technology has allowed us to hide behind our computers, saying anything and everything that we would never dream about saying to people in person.
We really need to put ourselves in one another's shoes every once in awhile...and please, remind yourself of what you teach your children- "don't say anything at all if you can't say anything nice."
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