On February 6, 2013, it will have been one year since I was admitted to the hospital and then transferred to inpatient rehab at Loma Linda East Campus. This was the day that my life completely changed, MS got real for me, and in the blur of all the commotion that was swallowing me alive, my priorities in life slowly started to become more clear. When was I diagnosed with MS? I don't even know anymore, sometime in August of 2012, but that date holds no significance to me like February 6, 2012 does. I thought I knew what Multiple Sclerosis was after my diagnosis but no, I had no clue, not until February 6, 2012, this was the worst experience I have ever gone through and probably ever will go through in my life but would I go back and change it if I could? No. It made me stronger and it let me see the world in a whole new way, a way that I would never have been able to see if not for this experience. It planted a seed that is still growing today, making me into a better person, making me want to do better things with my life, giving me motivation, the feeling that I can seriously do anything even if it seems impossible at the time, I can do it.
So why did I never talk about this? Surely it would make all my accomplishments this year seem so much more significant if everyone knew where I had come from... Well, when I was actually in rehab there was no way I could have wrote for many reasons (both physical and mental as well as logistical). After I got out my health was still pretty rough and I was too focused on recovering to try to write about my experience. After that I simply had major motivational issues, I just didn't want to do anything, plain and simple. Then for a while I just didn't want to think about it! Finally I thought “Well it has been so long I might as well just wait for the one year mark” which could have just been another excuse to not write about it, I am not sure, but either way, in a couple of days it will actually be my one year mark and since my life is finally changing dramatically it is time to talk about this the best I can. Will I remember everything? Probably not, but I will do my best, just bare with me, I am going to spend the next week or so really trying to write this out.
So where do I start?.. Well, how about at the start? I remember exactly what pushed me over the edge, I went to the zoo. My Mom wanted to go, so I said I would tag along even though it was kind of warm, I think I just wanted out. I remember my balance was falling apart, I was having a hard time walking, and I had to take many brakes. This is where the first gap in my memory comes to play, thinking back, I just don't remember, not even a blur, just... blank...
Now I am in the hospital and in some of the worst pain I have ever been in. My leg was so tight that it was contorting my lower back! I could not bend it, the nurses could not bend it, I even remember someone leaning on it with no luck, it was as as stiff as a 2x4. I remember my Dad trying to help me relax the muscle by “massaging” it to try to bend it but no, no help. The pain was overwhelming and bare mind, I have a high pain tolerance, a pain tolerance that was going to be tested over the next month or so. I just wanted to go home, they were not helping me there at the hospital, at least at home I could pop a bunch of Norco and kill some pan on my own but finally they persuaded me to stay, they gave me a shot of Dilaudid via my IV which helped take the edge off but it definitely was not as good as I had heard it was, but still, it helped a lot.
Now a man came into the room to talk to me about a private room at their East Campus rehabilitation center. He was dressed nicely, a suite I think? Basically, I knew he was an administrator and not a doctor. Maybe I have the details a bit wrong here but either way, he convinced me to go in instead of going home and it is a good thing I did...
Looking over my admission paperwork I can see that I mentioned an increased amount of fatigue, urinary retention issues, and weakness in my hands. I remember a doctor telling me their basic guidelines for admitting a patient was “You can't pee, see, or climb a tree, you need to be admitted”. Simple enough. So after some Solu-Medrol (IV steroids) they moved me from the ER to my room in rehab on a stretcher which they moved between buildings with an ambulance. I was going to get used to staring at the ceiling, most of the time I didn't know where I was or where I was going if I was not staring up at the ceiling panels, the lights, the fire sprinklers, etc.
My room was nice, it was an isolation room meant for people who had to be “sealed away” do to risk of infection and since no one had MRSA at the time they gave the room to me. It was like a hotel room with a hospital bed in it and lots of medical equipment. I had my own bathroom with a shower (that I could not physically use), a desk area, a flat screen TV (equip with cable and a DVD player as well as on demand movies), a couch that turned into a bed for guests, even my own balcony! It was well decorated, nice warm painted walls, paintings hung about, fancy molding, hard wood floors, etc. It was nice but hard to enjoy given that my body was falling apart and I could not get around the room... I could not even transfer to my wheelchair to use the restroom on my own!
Speaking of which, I don't remember how fast it happened but I was continuing to decline... Soon I was basically unable to move from the neck down. I could not stand or even sit up on my own. I had some gross motor skills as in, I could lift a limp arm but not open and close my hand. All independence was starting to disappear, as I said, I could not even use the restroom without help, you probably have no idea how that effected me, I have always been an independent minded person, and now? It was all gone. Literally. My urinary retention issue was so bad at the time that I could not actually go on my own, they had to use a catheter, that hurt both me and my pride... I didn't want to bring that up but you know what? It happened. I felt like a vegetable, a piece of meat with tubes and wires all over that they were simply keeping alive, it was not long before I wanted to die, I was OK with it, but death? That would have been a luxury at the time. Instead I just laid there staring at the ceiling, watching the clock on the wall tick away every second, minute, and hour until I could finally sleep and focus on the next day as it came. Time never moved so slow.