Stop Raining on My Parade

I just have to get this off my chest because I'm tired of holding it in. I've had so much support, but the constant questions of "when are you going to walk" or "when are you going to do ___" are actually really discouraging. I find myself holding a lot in these days because I don't want to make other people uncomfortable or because I'd rather choose my battles and what's more important to complain about, but this has been beating me down for awhile now.

Spinal cord injuries are not like a broken bone. It's not something you get surgery on and have a set recovery date or timeframe. The nervous system just doesn't work like that. Every single spinal cord injury is different...you can take two people with the exact same level injury and even they will have different abilities or recovery. I've been fortunate enough to constantly get good news from my doctors, but I think people misunderstand what good news means. People think that my "good news" should be that I'm going to be walking any day now and that's not really what it's about. To me, improvement is improvement, no matter how little or small. I mean, there were times not that long ago, that medical students were taught that when there is damage to the spinal cord, there is no recovery. If you keep that in mind and then remember that I had complete inflammation of my brain and spinal cord--the WHOLE thing-- then for me to be where I am today is pretty amazing.

I always forget that I actually almost died. DIED. As in, there was a night where I crashed in the ICU and they almost had to call the code and all the staff ran into my room, then prepared my friends and family for the worst. My mom almost killed a resident and my brother almost broke his hand from punching the floor. (Just to put things into perspective a little).

What people don't understand is that if you hear the same thing enough times, you're going to start believing it. If you ask a person enough times when they're going to walk, nothing they accomplish is going to feel like a success unless it's that one thing.

I had all of my six month follow up doctor's appointments this past week and got some really great news. My urologist said my bladder function is stable and pretty much back to normal (that may be TMI, but trust me, this is one of the biggest blessings...so many people become a slave to their bladders and either avoid leaving the house for the fear of having an accident or are constantly watching the clock in order to be on a schedule of when to visit the restroom). My neuro-immunologist at Hopkins was extremely impressed with my progress...so much so that he told me about five times throughout my appointment. He thinks my level has improved from the last time I saw him and reminded me that this isn't a sprint. My recovery is a marathon and it doesn't matter how long it takes, but to remember that it's going to happen. He also reminded me to keep a positive attitude because that is such a crucial part in my recovery. These days, I have to fight harder and harder to keep that positive attitude because I feel like I'm constantly getting beaten down (which is why I feel like I need to write this). Lastly, my rehab doctor said he was "very very happy happy happy," which was meant to be better than the previous doctor's comment of being "very impressed." I told him that we thought my injury level had improved and he decided to do a detailed exam to figure out the exact level.

I wrote about it before, but the test is called an "ASIA" exam. It stands for the American Spinal Injury Association impairment scale and is a detailed way of classifying a spinal cord injury. It's not prefect because SCIs are so various and just because two people have the same score, they won't necessarily have the same function. Anyways, you can read a little about it here. Basically, they examined light touch sensation (can I feel something touching me), sharp vs dull sensation, proprioception (where my body is in space, i.e. if my toe is bent up or down), and then motor function and if I can move different muscle groups. There are a lot of different nerve tracts and those tests check to see which of those tracts are working and at what level they are impaired. These test were performed at each level of the spinal cord and I changed from T4 to T9, according to my previous exam.  And what's really awesome is that S1 was intact on my right side, which means everything is intact and slowly coming back. (Also, if you look at this chart, you'll notice how imperfect this test is. I have all autonomic control on the left side and some functionality from the T11-T12 and L1-S2 groups, but the grade for the exam is the last place everything was completely normal.)

This is a HUGE change. But I think what is disappointing is that unless you've been through all of this or have the knowledge of what all this means, you don't understand what a big deal this is. People may hear that and still say "but you're working so hard, why isn't it even better?" Like what I'm doing isn't good enough...and then I start to believe it. I want more too. I mean, I understand. If someone posted a Facebook status two years ago saying "I changed from T4 to T9!!" I would have had no idea what in the world that meant, so I try to educate people and not let it get to me (easier said than done).

Maybe the misunderstanding came from me telling everyone that my MRIs are normal and that my doctors said I'll make a full recovery. Maybe it's my fault that I didn't explain it could take years. Yes, years. People also think that means that I'm going to do therapy 24/7 until it happens and that's just not true. I've grown a lot and I've come to the realization that God is in charge of my life and when things are meant to happen they will. I'm not going to waste away my life waiting. I'm doing everything I was doing before I got sick. I'm finishing school, I'm driving, I'm looking into moving out on my own. I'm doing it all. Hell, if I never walked, shouldn't this be enough? Which brings me to another point. As long as I'm happy and doing everything I would have done before, taking my life back, why would it matter if I stayed in a wheelchair? It's just a mode of transportation. You use legs, I use wheels. Stop feeling sorry for me. I'm happy. I mean, I have my struggles and this world was not made to be accessible, but doesn't everyone have struggles? I'm not going to dwell on them and I'd really like for people to stop thinking that I should.

I asked all of my doctors what I could do differently or if there was anything I could do to speed things along and every single one of them almost laughed. I'm doing everything I could possibly do. Matter of fact, one told me I was doing a little too much and that I need to give my muscles a 48-72hour break between using electrical stimulation on them. So the answer is time. It sucks, but that's life. And I'll say it again, I'm happy.