Life can be very strange sometimes. On Sunday, January 13th, I was so weak that I needed to take a nap after eating half of a bowl of rice krispies. Think about what a strange symptom that is. I was in the Neuro ICU at Froedtert Hospital in Milwaukee, and my nurse called the doctor urgently. They decided to do emergency surgery that ended up saving my life. They knew that it was necessary, in part, because I could not eat a bowl of rice krispies. Life is strange.
My surgical procedure ended in the wee hours of Monday, January 14th. Since it was so late, the staff decided to ensure I’d be able to breathe by leaving me on the respirator. When they woke me up in the middle of the night, I immediately hated this machine. I started to struggle and fight the machine, and they sedated me. Wise move. Thankfully, I did not feel anything more until the morning.
And that marked the end of my decline, and the start of my recovery.
I must admit, I don’t remember too much about the next two days. I call this time my “black fog.” I was conscious, and was able to talk and so forth, but I was so tired and weak that my brain was losing details. You know how easy it is to forget what you’re doing when you’re over-tired? Well, I was in the ultimate stages of overtiredness.
At the same time, a peculiar thing was happening to me. Somewhere deep within all of us, is something I like to call “the angel within.” Other people might refer to it as your soul, or your true essence. It’s the part of you that really defines who you are, without any defenses or walls put up. It’s something like a young child, very vulnerable, but also very raw and powerful. My angel has come out twice before in my life that I can remember. The first time was when my Mom died in a car accident in 1997 – it helped with the grieving process, but soon hid back behind defenses. The second time was when my son was born in 2005, but in this case, it was focused on only one person, my son.
So here I am, I have barely survived, I am extremely weak, and I am paralyzed from the waist down. Now my inner angel has come back to the surface and taken control. It has given me pure, raw determination, suffused with hope, wonder, and inspiration. Isn’t that amazing?
If you think of what I’m going through, I really had two possible choices of how to face the long road of recovery:
- I did nothing wrong, and due to a freak growth of blood vessels, I’m now paralyzed from the waist down. I can cry, complain, and feel sorry for myself.
- I can be happy. I can feel lucky to be alive, work really hard, and get better every day. I can view everything as new puzzles to solve, new challenges to face. And live my life 110%!
The “angel” had chosen #2. And if you think about it, it’s really the only choice. Why would I want to be miserable and unhappy? Why would anyone ever take that path?
And yet, every day I meet more fellow patients who have chosen that first option. They do the minimum amount of work they can to get through rehab, and they complain about it. Not me. I’m giving everything 110%!
From here I will list the posts that I wrote to my friends, each day telling my progress.
January 20th, 2013:
Physical rehab is really hard work. But, I'm amazed at how wonderful the human muscles are. Working them to exhaustion not only makes you feel stronger and better, but it also gives you energy. I repeat – exhausting my muscles gives me energy! Wow, does that feel good.
Right now, I'm able to make my legs twitch. That's not much, but it's a little more than I could do before. It gives me hope that maybe I'll get them working again! My arms (which never stopped working) are getting very strong too -- because, for now at least, I need to learn to live without using my legs.
In addition to weight training, the therapists have been working with me to learn how to transfer to and from my wheelchair. We are using a device called a “beasy board”, which is a circular seat that slides down a channel. I get my butt on that board, and push it over to the wheelchair. It’s very difficult, and sitting in the wheelchair is exhausting. Who thought sitting up would be tiring work? Isn’t sitting something you do to rest?
Every day I feel a little bit better. Look out world!!
January 21st, 2013:
Today, I've found my balance to be much better. It's easier to sit up without falling over. My arm strength keeps getting better, too. From a gym mat, I can now pull myself up to a sitting position with my arms. I actually surprised my therapist with that one. She wasn't expecting me to be able to do that.
Dr. Lazzaro, the doctor that saved my life, stopped by and explained the procedure in detail to me. He provided some pictures of the actual fistula as they could see it. This man is very good at explaining things, and is very patient. I understand the gist of it, but it’s extremely complicated stuff. I’m very grateful for him. This guy is absolutely brilliant.
There was more therapy in the afternoon. I kid you not, this is extremely hard work, but I'm really feeling good about it. Thanks so much for all your encouraging words! They are really helping me keep my spirits high, and giving me the spirit to win this thing!
January 22nd, 2013:
Great day! We had a team meeting for the first time today, with my therapists, doctors, nurses, and quite a few other people (vocational counselor, psychologist, social worker, all sorts of people.) Everything went great with that.
I feel very lucky. Is that weird? Because I do. I feel wonderful, and I’m having a great time. It almost makes me feel guilty. Here I am, supposed to be miserable in the hospital, and I feel great!
My wife added the following note to friends and family on January 22nd:
“I watched Scotty do his PT for an hour before we went to the meeting. When the therapist asked him to do 10 reps of each of a few different things, Scotty did 40 of each. He's so determined to get strong and get everything out of therapy he can! I've never seen him more motivated in my life! I'm so proud of him!”
January 23rd, 2013:
Today's report: I guess the therapists are fighting over me. I was told by one of them (who was filling in, and trying to figure out when she'd be able to see me again) that the therapists fight over the "good patients", i.e. the ones making a lot of progress, and with a good attitude. She said, with dismay, that the ones who have student helpers tend to get the good patients like me. C'mon, people, there's enough of me to go around!
My wife adds:
“He did more transferring, and upper body strengthening, as well as learning how to transfer to a chair that will go in the shower. Tomorrow he will get his first official shower at Froedtert Hospital. He's had sponge baths and such, but tomorrow is a shower with Angie! And no, I'm not jealous. In fact, they invited me to be there if I wanted.”
January 24th, 2013:
Today, I took a shower. It was the first one in 19 days and with real water. You may be saying "big deal, that's normal. Everyone does that every day." No. You truly don't understand how a real shower with real water is a great, great, great thing. It’s quite possibly the greatest invention of all mankind. Next time you take a shower, enjoy it. Savor it. Remember how wonderful it is, because they are the best things ever. I may even decide to write poetry about this.
I had a somewhat lighter workout in the gym today because of the time devoted to the shower, and also a wheelchair assessment meeting. They took lots of measurements and discussed many wheelchair parts with me, to figure out what sort of rig to get. Since I'll be spending an awful lot of time in one, they wanted to get one that's perfect for me.
Finally, to blow the lid off of the day, some friends stopped by, brought pizza, and we played cards. It was great. When something like this happens to you (though, I really hope it never does) always remember that life doesn't end. You can still live it up and have a great day. A simple pizza and card game goes a long way.
January 25th, 2013:
Therapy today went really well. I basically dressed myself without much help at all. Transfers to/from wheelchair are getting easier, though still pretty hard. I'm really excited that I will master this skill. Weight lifting and strength training went really well today, and I think I made excellent progress , though, I must admit, I'm really tired. We also had some recreational therapy, where they challenged me by adding weights to my arms, while doing recreational things. Today, my son and I played on the Wii for this therapy. He was thrilled to be helping, and I had weights on my arms, but still enjoyed playing video games with my son. It was a great day, and the therapists let it run extra late because they were enjoying working with my family.
It's non-stop action here. Every day, between medical, therapy, and visitors, there's always something going on. And you know what, that's exactly what I wanted. I want to live life 110% in everything I do! And I suggest the same for you. You never know when life will change, so find something you enjoy, and don't let little problems or distractions ruin it for you. Live!
January 26th, 2013:
Today was my day off (for the weekend) from therapy. I wasn't completely lax, though. I did a lot of self-propelling my wheelchair to get some exercise, and did some theraband exercises that the therapists gave me for homework. Honestly, it made my body feel better. When I wasn't getting any exercise earlier, I didn't feel as good.
My brother and my sister-in-law-to-be (who I'd like to just call "sister") came in from Stevens Point, and spent almost the whole day with me. They bought me a birthday gift (my birthday is Monday, but we celebrated today), a D&D Castle Ravenloft board game, which my brother and I played.
In the gym, there's a recreation room that we were able to use. There was a little game table with mini-foosball, mini-billiards, and mini-air-hockey, that I played with my 7-year old son, Alex. There was also a dart board. They have tables suspended from the ceiling, but one was down and that's where we had dinner together. It’s much better than trying to eat in the patient room and more space to sit and chat.
It was a relaxing, and good day. Tomorrow, I will go back to "real" therapy.
