Come Sail Away With Me

After doing the indoor skydiving last month, my friend, Josh invited me to a sailing clinic in Annapolis. He is the founder of SPINALpedia, a social mentoring network that brings together people within the spinal cord injury community and also has a video archive so people can share their knowledge and experiences with each other. He tries to set up a lot of different adaptive sports and activities for individuals and families. He mentioned this sailing clinic and I honestly wasn't that interested at first. I love being on boats and on the water, but I knew nothing about actual sailboats. As the time drew closer, Josh was persistent in asking me to go and learn about "adaptive sailing." When my housing arrangement with friends in Annapolis fell through, he even offered to pay for my hotel during the two nights I was in town. (He made it VERY hard to say no!)

The more I thought about it, I realized that this clinic would be a perfect distraction. My graduation from optometry school was scheduled for the 25th and the timing of this even couldn't have been better. I had toyed around with the idea of actually going to graduation because my roommate and best friend, Annie, had offered me her extra ticket. I wanted to go to see all my friends and offer my support, but after more consideration, I realized I would just be setting myself up for heartbreak. Becoming an eye doctor has been my goal since the third grade. All those years of school and hard work were supposed to come to an end in May 2017, I'd been looking forward to it for what seemed like forever. And while I would've been happy for my friends, I think I would have found myself feeling sorry for myself.

The adaptive sailing clinic was put on by an organization called CRAB--Chesapeake Recreational Adaptive Boating. They work a lot with wounded warriors, but I think this was one of the first clinics with just individuals with spinal cord injuries. Words can't even describe how amazing this experience was. We got classroom instructions, starting with the basics, like the parts of the boat. We took everything we learned onto the water all in the same day. I loved being able to learn and then put that knowledge to use and practice right away.

There were two SCI individuals and an experienced skipper on each boat. We had seven people with SCIs, so there were three boats and then Josh had his own boat. Since he doesn't have much hand movement, they had a boat that was controlled by a straw! There are wheelchairs like this, called "sip and puff," where you sip to stop and puff to go (or the other way around?) but I had never imagined a boat being operated like that! Even better is that Josh is very successful as a lawyer and in his business, but said that operating that boat was the most independent and powerful he's felt since his accident. And it's true. I'd tried my hand at a few adaptive sports and I like them all for different reasons, but being in that boat on the water was the most freeing feeling...having total control of the boat and just focusing on everything we had learned in order to get it to the destination we wanted was incredible.

I think what made the clinic even better was the people I met. I don't think you can really understand unless you've been there, but being around other people in wheelchairs made me feel a sense of normalcy. It's one of the only groups of people you can be around where the focus isn't about the wheelchair. You have people you can joke about your struggles with, share experiences, and learn form each other. I haven't really gotten to experience that much because I've only been around others in wheelchairs while in therapy, and that's just a different setting.

We went to happy hour and asked for a table to accommodate four wheelchairs. I hadn't done that before. I'm usually the only one, which means that all the attention is on me. When I'm the only one in a wheelchair in a group of people, everyone feels the need to go out of their way to make sure I'm "okay." While it's nice and I'm thankful that everyone looks out for me, I like going out in order to get away from all the struggles my health brings. I don't like all eyes on me or when people think it's okay to come up and start asking questions about what happened or congratulate me for getting out of the house. (This seriously happens and I swear people think that if you're in a wheelchair, you should be at home wallowing in your own pity). It's hard to explain, but it's almost like because there were four of us, no one really paid attention. I didn't feel "out of place," like I sometimes do.

While I was extremely thankful for this opportunity to learn how to sail, I was even more thankful for the new relationships I formed.

**On a side note, the clinic was cancelled for Thursday due to the predicted bad weather, but I stayed busy (Mom made sure of it). My friends still texted me to let me know they were thinking about me and that the day wasn't the same without me, but I surprisingly felt pretty numb. I didn't shed a single tear, which is pretty uncharacteristic of me in times like that. Maybe because I know that it'll be me crossing that stage and wearing my long white coat with the inscription of "Dr. Kelly Morse" in the near future (or maybe it was the wine and chocolate I was indulging in), but regardless, I didn't throw myself a pity party.

What's Next?

What’s next? That’s a question I get on a daily basis these days, or at least ever since I was discharged from Kennedy Krieger. Last Wednesday was (fortunately) and unfortunately my last day. I was given a home program filled with exercises to do at home and told to return in 4-5 months. I’ll be doing things like: riding my stim bike, using my stander/glider, working on standing with a walker at home, swimming, walking in the water, and strength training at my own gym.

Last time I took a break from therapy was last August, after going 3-4 days a week since that April. I remember being so upset that they were discharging me. I have to go through monthly evaluations to track progress and if I’ve met me goals or new changes were noted, they would extend me. Well, in typical “Kelly” fashion, I was crushing my goals and was seeing a lot of improvement, so I kept getting an extra month added on. Being discharged, to me, meant that I wasn’t improving or that I wasn’t doing as well as I had been. (This really wasn’t the case, but I had it in my head that it was). The next four months, I spent going to the gym, using my equipment at home, and actually having a life since I wasn’t traveling multiple days a week. I reconnected with different friends, got back to doing schoolwork, and actually got a lot stronger. Taking a break turned out to be the best thing I could’ve done, because when I returned, I was able to do so much more than I had before because I actually worked hard while I was gone, making therapy that much more successful once I came back.

During this stent of therapy, I crushed a lot of goals and definitely saw a large amount of improvement, surprising both my therapists and myself. Here are some of my accomplishments:

-First of all, I’ve lost 30lb since January and over 4 inches off my hips! This has to be first because I think it’s one of the main things that has helped make everything else easier and more successful.

-I'm completely independent (that is, if things are accessible, which unfortunately isn't the case in most places). But I've surprisingly even made non-accessible places work for me, which is a huge improvement. 

-I have accomplished a minimum assist sit-to-stand with a walker and can even stand with only a little bit of help at my knees once in a while for an extended amount of time.

-My core is strong enough to support my own hips while standing.

-I'm working on floor transfers, which is something that used to make me cry whenever someone would mention those words to me (I've come a long way...)

-I have my license and am just waiting for vocational rehab to finish paperwork in order to pay for my hand controls (they don't reimburse people, so it's worth the wait in order to save a few thousand dollars).

-I only have five courses left of school (two of which I'm in the process of completing now and one that will be done after a four day continuing education class on campus in June...speaking of that class, I'll be making that trip to Philly by myself if my hand controls come in and if not, I'll be getting a ride and spending the weekend in the hotel by myself...BIG changes, huh??)

-I'm able to load and unload my own chair into the car...not very gracefully because I'm covered in bruises. And not very fast, but practice makes perfect, right?

-My stim bike power is continually increasing and has proven to play a large role in my strength and recovery.

-Dusty and I are working on our slow dancing because we have about five weddings to attend before the end of the year. We danced at a wedding in September and it was sweet, but I think my standing has improved a lot since then, so I know we can make it look more natural and kind of blend in on the dance floor a little better, haha.

A side note about school: it's kind of an upsetting subject. And no matter how many times I say that or explain to people that I don't really know what's going on with it, they continue to ask questions. I'm just taking one (or two) classes at a time and focusing on getting through those. I'm not even as uptight about getting a perfect score on exams like I used to...I literally just want to pass and keep moving forward. Once I finish these last couple classes, I'll move onto my rotations. I don't know when they will be, how long they will be, or where they will be. All I know is that I'll be going on rotations. Thinking and worrying about it just stresses me out. Plus, with all I've been through, I've learned that God laughs when we try to plan everything. I've spent my whole life planning...planning every single detail of my life... and I simply don't want to do it anymore. 

And there you have it...a little update because so many have noticed how much I've been slacking on my posts. I can't help it! Therapy is a full time job (literally over 4-5 hours of working out per day), school takes up even more time than that, and I have luckily reserved the remainder of my time to continue to have somewhat of a social life. 

May 1, 2017- I think I'm due for a "me" update

I've gotten a little carried away with other topics and things that I want to write about lately...sometimes it's nice to not talk about myself! I feel like that's all I do in my everyday life- people what to know how I'm doing, what has changed, how's school, how's everything else and then they want to talk about how far I've come and "remember when you couldn't do ___"...and I know they mean well, but I really just don't want to focus on those things, or really even talk about myself at all sometimes.

But I think I owe it to everyone to give a little update since I haven't in a little over a month, haha. So, the bad stuff first. I mentioned in my last post how I've started experiencing this dreaded nerve pain I've heard everyone talk about. The cold and rain actually make it worse, so I've been feeling pretty great since the sun has been out for the last few days. I have some weird sensations, like my feet feel like they are asleep again. And I have kind of a new movement in my right quad...I can contract it and squeeze it on my own, which is a new "independent" movement and hopefully enough to get a little bit of an extension for therapy during my evaluation this week. I'm supposed to be done at KKI this month, which really stinks because I'm not sure when I'll be back. I turn 26 in July and really haven't sorted out the details or what I'm going to do for insurance and how that is going to affect which doctors I can see or what kind of therapy I can receive. Honestly, I don't even want to think about it because I'm worried, but I know it needs to be dealt with...I've kind of been putting it on the back burner, but it definitely needs to be handled soon because time is running out.

Anyways, so this nerve pain isn't bad at all when it's sunny and beautiful out, but during the gloomy, rainy days, I feel pretty much as miserable as it looks outside. It's kind of funny how much of an impact the weather has on us...not just how my body feels but it definitely takes a toll on my mood. Nobody likes leaving the house when it's gross out, but it's even harder going anywhere in a wheelchair...I can't hold an umbrella while I push myself, so I'm automatically wet unless someone is holding one over the two of us. Not to mention that my hands, sides of my shirt and pants next to my wheels get wet because it's not to easy avoiding the wet ground or puddles.

Therapy has been going well though. I've really enjoyed my time in the eksoskeleton and I've gotten more used to what I'm supposed to be doing when I'm in it. I feel like they're always giving me different commands and I get so overwhelmed! Weight shift this way, hold your leg straight here, kick this leg like a soccer ball, bring this foot up like you're stepping over a wall...it's a lot to keep up with! The pool has been increasingly better and I feel like that's where I see most of my improvement. Some days are better than others and on those days, I can bring my legs forward on my own and only need help keeping my knees straight. Other days, I need a lot more help and feel a little defeated that all days can't be good days. My last pool session went really well, though. My right ankle kept twisting and landing weird, so we did something we hadn't tried before- I had a therapist on each leg (mostly just to keep my knee straight as I brought the other leg forward) and I had complete control of my own hips. I usually need someone behind me to prevent me from sticking my butt out or using my body momentum as a compensation to bring my legs forward, but I was perfectly straight! My abs were on fire for a couple days after all this, but it was a big improvement!

Here's a laundry list of what is new and what I've been working on in therapy:
-working on my sit-to-stands (they have a long ways to go...even when someone is holding my knees, I still have trouble standing with the walker. I'm hoping most of it is just my own fear, but there's a lot of room for improvement in this area)
-Standing- I've even used virtual reality to help take some of the focus off all the effort it takes to stand and it has been going really well
-I did the RT600 for the first time in over 6 months, which is kind of like my bike. It uses electrical stimulation to make me support my own body weight to walk. There was a huge difference since the last time I did it and it seemed to go pretty well
-I'm still working on loading and unloading my chair from the car...it's extremely frustrating, but I'm determined to get the time down
-I GOT MY LICENSE!! I passed my DMV test last week! The Vocational Rehab said they are going to be able to pay for my hand controls...the only problem is that they've never done it before and I'm their first case, so we have no idea how long this is going to take. They don't do any back pay either, so I'm kind of at a stand still in driving until they pay for the controls. But once they do, my driver's rehab center is going to install them, make sure I feel comfortable, and then I'm free!
-School still sucks. I'm studying like crazy every single day and still feeling like I'm getting nowhere. I'm taking my two hardest classes, so I guess that is to be expected.
-I went adaptive indoor skydiving this week!! Spinalpedia and my friend Josh invited me for their "all abilities" night. They even had an extra spot and asked me if Dusty would do it... Dusty is very practical. He likes adrenaline and adventure, but he doesn't understand why I've jumped out of a perfectly good airplane before or jumped off a perfectly nice bridge...he hasn't even watched my videos from either experience! He told me once that the only way he would skydive is if he were only a few feet off the ground, so I was interested to hear his response when I told him about the opening for the indoor skydiving. Much to my surprise, he agreed, and even more surprisingly, he enjoyed it!! Even though we didn't go at the exact same time, it was such a cool experience to have together.

I guess that's a pretty good update for now. (Oh, and I've lost a total of 30lb!! So I should probably attach some photos as well...)

There aren't such things as coincidences

I don't believe in coincidences... I may use the phrase "what a coincidence!" but when I stop to think about it, is it really? Things don't just happen out of the blue. Things happen for a reason. Everything happens for a reason.

I chose to believe that when I'm stuck in traffic when I'm in a hurry to get somewhere, God is keeping me from something--from being involved in an accident if I would've gotten where I was headed to 15minutes earlier, etc. I believe that when things don't happen when I want them to do, God is telling me that His plan is better than mine (which is a hard pill to swallow sometimes). I believe that God puts people in our lives just when we need them, and He may also let people fade out of our lives if they aren't having a positive impact on us.

Well, God made His presence known loud and clear last Saturday morning. I had to go to Philadelphia last week to meet with one of my professors in preparation for an upcoming exam and then Mom and I stayed in York because Rachel's (one of my grad school roommates) bridal shower was the following afternoon.

I've honestly been in a little bit of a funk this past week because I've started experiencing some changes in my body. After I had that strange sensation in my feet, like they were always asleep, Dr. Pardo warned me that while it is a good sign and indicates nerve recovery, nerve pain may follow. He explained that those nerves are trying to rewire and reconnect, but the circuitry isn't perfect, so there will be misfiring. There's no way to know how my body will react, but he told me to let him know if I needed any medications for the discomfort. At the time he told me all of this, I kind of brushed it off, I could handle feeling like my feet were asleep. It didn't hurt, it was just a little annoying. This week is when that pain started to kick in. And I don't really like to call it pain, but more like extreme discomfort. If you know me, you know how much I hate to be cold and this sensation is best described as being cold all the way to the bone- the tops of my thighs, down my legs, and the tips of my toes almost feel frostbit. Maybe it's all in my head and how I like to think about the nerves trying to reconnect, but it also feels like small electrical zaps. I keep picturing an electrical wire cut in half and then trying to touch the broken ends together again. Those sparks are what I'm feeling (or convincing myself that I'm feeling). Along with this steady electrical hum or buzz. My friends always described a "buzzing" in their legs or feet and I can finally join the club...not that I'm proud of it, but at least I understand what they're talking about now.

I was extremely uncomfortable Friday night and was starting to have a little pity party for myself. I don't want to be like other patients I've talked to that stop doing what they enjoy doing or living their life and have to stay in bed because of their nerve pain and discomfort. Not wanting to go out to dinner that night because I was so uncomfortable made me feel like I was going to be like that...and I don't want this illness to take away anything more than what it already has. I'm supposed to be improving, taking my life back, not taking steps backwards. I did decide to suck it up and go out and was happy I did and was actually feeling much better once I got out of the hotel room.

So, back to my story about Saturday morning. We didn't set an alarm, which allowed for a slower start. I had to shower and the bathroom wasn't the most accessible, so getting in and out of the shower was a little bit of a struggle. By the time I was ready, it was 9:15 and we were worried that breakfast may stop by 9:30, so we rushed downstairs. As soon as we got down there, I took the closest table and Mom went to see what food was available. This man said good morning to me, then started to talk to Mom as he got his food. There was just something about this man and the way he carried himself that made me think people are easily drawn to him and I wanted to know more about why he was here, so I was happy Mom kept asking questions. It wasn't surprising when he said he does evangelical work.

Turns out, he was a retired NBA player in town with an organization called SportsPower International. It's an organization where several retired players and professional athletes conduct internationally televised basketball games, camps, clinics, school assemblies, etc. and share stories of faith, leadership and responsibility with today's youth. Mom and I ate our breakfast and about 20minutes later, my eyes caught this man's from across the room. He was with a group of people (some who were very tall men that I assumed must be other players) and he motioned for me to come over. I don't know why I looked up when I did or really why I felt like I should go over there when he told me to, but I just did. They were having a small devotional to start the day and I felt so privileged to be a part of it. The pastor and the one leading the discussion had been the champlain for the Knicks for 25 years!

At the end of the discussion, I shared my story and we all held hands as they prayed for me. I feel like people are always praying for me and I've been in situations like this before, but this was so much more...powerful. Mom and I both said that we felt like if they had prayed and said for me to stand up, we honestly think it would've happened right then and there. They said something I hadn't really thought about before...I'm using my story now to reach people, but God will be even more glorified when I stand up and give my testimony. It's all about timing and I don't think it's the right time yet.

The organization has a base in Baltimore and they invited us to come by the church if we have any free time when we're in town.

It was such an unexpected experience and it couldn't have come at a better time. Just when I was feeling kind of down and defeated about how uncomfortable I'd been feeling, we met these incredible people that literally welcomed us with open arms. I feel like sometimes, my wheelchair prevents people from getting close or kind of intimidates or scares them, but sometimes, it invites people to get close and share their story. These are the encounters that people talk about when you ask them if they'd change anything about being in a wheelchair. More times than not, people answer by saying they'd give anything to walk again, but they wouldn't change the journey and the relationships they've made along the way. This is what they're talking about.