This is the first time I’ve been able to take consecutive steps without holding onto anything. The video is from therapy a week ago, 1/17/14, with Tiffany at therapy. I walked maybe 6-8 feet. I’m basically just kind of hopping, but it’s a start. My balance is definitely getting better at least!
Friday 24 January 2014
Monday 6 January 2014
Christmas and New Year's Edition - 12 days of no wheelchair!
Warning: this is my longest entry yet. A lot of interesting things happened in the last couple weeks!
Saturday night, Dec. 21, we had our Christmas in Chicago. 
Two of my presents were my favorite cake, Thousand Hole Cake, wrapped up. I had wondered where 3/4 of the cake disappeared to and was avoiding telling Rebecca to chill on the sweets. She also got me more advanced guitar lessons at Old Town School of Folk Music. Should be sweet!
Rebecca was extremely happy to open the dog bowls and leash that I had gotten her, letting her know that we’d get a dog as soon as we got back. Her happiness was momentarily dulled at the realization that she had to wait 2 weeks and that the dog wasn’t around the corner hiding in the next room.
Our overpriced dumpy tree we got in the parking lot of Jewel. It’s basically a bush with an antenna, but we love it and refuse to take it down, yet.
Sunday, Dec. 22, at 2:30pm, Rebecca and I were in the apartment. I had just finished showering and she had just finished running. We hadn’t started packing and the shuttle bus was to arrive in 30 minutes. On top of that, we were packing for Kentucky, California, and a hike up to a hut in Tahoe, the last of which was proving to be troubling on how exactly I could participate.
At 3, the driver called to let me know he was downstairs. We threw presents and wads of clothes and catheters in the suitcase and hiking backpack and basically did a terrible job of packing. I put my braces and shoes on and headed down on the crutches. At this point it was 3:15. The driver told me he had to leave. Just then Rebecca came out weighed down by our luggage. We made it! $3 each to get a ride from the apartment all the way to Midway airport. One of the few perks of being labled as “disabled.”
There were a couple risks taken in this rush scenario. I was aware of these things:
- I had a limited supply of catheters that would not get me through the trip. I was counting on a new supply arriving at my parents’ house in Kentucky.
- We left my wheelchair at home.
- I had no idea how I was going to get up to the hut in Tahoe
- We left my walker at home since Rebecca had her arms full, already, and the guy was leaving. So I just had my crutches.
I’ll get to how all of these items have impacted me soon.
Christmas in Kentucky was awesome. Leaving the wheelchair forced me to get around using either crutches or my grandma’s old rickety walker we found in the garage at my parents’ house. At least that solved the walker problem. I can use the crutches everywhere, but it’s much easier to stand with a walker, especially from a low seat. We had a great visit on the 23rd at the home of my Aunt Cha and Uncle Lee. All of my Louisville family was there. Good times.
On Christmas Eve, I sang “O Holy Night” at two of the night services at my church back home, St. John United Methodist. The 7 o’clock service went great. A month ago I had planned on sitting to sing, but my balance and stamina have gotten good enough that I decided to stand and sing, just like usual. `I walked up from the back, kept my arms in my crutches as I stood at the podium and sang. It seems that all the strenuous activity in my recovery has given me far more breath support in singing and it felt like I had far more power. It felt awesome and I felt very much like I was doing what God wanted me to do.
The 11 o’clock service didn’t go as well. I waited in the back hallway, carefully stepped down onto platform, and stood with my mom behind the piano and in front of a Christmas tree. We waited for the bell choir to finish. As their song ended, I prepared to make my way to the podium. I started tipping back a bit, and as usual, moved my crutches to the back to support me and keep me from falling. Except, this time, my crutches were halted by the step behind me I had forgotten about. I slowly started falling. “Mom? Hey mom…??? PSSST…. MOM!” I whispered as I fell. CRASH! I slammed into the bottom portion of the Christmas tree and that stupid step. My ego was more bruised than anything else. Actually that’s not true - I didn’t feel it at the time but my back bruised up nicely from where it hit the step. My dad ran up on stage, helped me up, and I insisted on continuing up to the podium where I tried to ease the awkwardness by jokingly saying, “Sometimes my legs don’t do what I want!” Then I sang very shakily, since Louie insisted on strongly spasming throughout. I thought it was shaky - other people said it was good. Who knows? It’s really hard to tell if people are just being sympathetic or if they mean it sometimes.
That’s me singing and my mom playing piano. That pain of a step is right behind her.
My dad had us all go out to the Nays’ farm to do some shooting. The .22 rifle jammed so the guys took turns shooting a pumpkin and some water bottles with the .30-06 rifle. I did alright. Rebecca didn’t shoot because it was so loud she was afraid of hurting her little ears.
I found out later that people thought it was actually MORE impactful seeing me get up from that fall and carry through with the song. I’m glad, since for me it was simply embarrassing! Hopefully a few folks get the idea that when you fall down, there’s nothing to do but get up! Right? Anything else is unproductive.
As usual we stayed up late after church opening presents. After many rounds of fun games and great food, we headed to the airport to fly to California on the 26th. One problem – my shipment of catheters never showed up. Apparently the supplier was waiting for verification from me. What did they think the order was? Interest? So I headed to California trying to figure out which local supplier might provide me with more catheters.
I used the airport wheelchairs everywhere we went to ease up on my efforts. Stephen and Leah picked us up at the San Francisco Airport and drove us to Nipomo. No luck on the catheters, yet.
While waiting for the rest of the car to get sandwiches at Safeway, I tried breaking my unassisted standing record in the sunny parking lot. I broke 10 minutes! New PR.
After arriving at the Maier parents’ house, we played games and ate dinner.
That’s the Maier mom, Donna, trying to blow out trick candles. Dad Maier, Paul, got a little impatient and tried putting the candles out… with a napkin. We managed to put out the fire before the house burned down. It was kind of hilarious and simultaneously unnerving when the napkin burst into flames.
The next day most of them wanted to go on a long run by the beach. Before we left, I went to the bathroom and as I walked there, I felt the urge to pee increase more than usual. Rebecca handed me a catheter, walked away, and seconds later came back to the sound of me peeing. I’m sorry if this is too much information, but this is a very big deal for me! I peed on my own… standing, for the first time in almost 9 months. It felt great. Plus I saved a catheter! I was scared it was a freak occurrence or something but it was still worth celebrating. Cathing is no fun.
They went on their run and I walked far enough to give me a good workout – maybe ¾ a mile, taking a break to check out a cool lake covered in ducks. Afterwards we went to Pismo Beach to check it out, then headed home to open presents.
The view from the bench I found in my walk.
The Beagle and I at Pismo Beach. My sunglasses are crooked here. I do not have crooked ears.
Watching the sunset at Pismo Beach.
Pismo Beach - with just HALF of the Maier clan (and Emily).
The next day we said our goodbyes and headed to Reno to prepare for the hike to the hut in Tahoe.
Enjoying my justified right of using the scooter at Costco.
I hadn’t used my wheelchair in over a week at that point. For the last two days, I’d only cathed before and after going to bed, to make sure I “voided,” which just means emptying.
That left me with the hut trip dilemma. I could probably make an entire blog entry about that, and I haven’t even gone up to the hut, yet! I was told to not break up the entry, so here we go…
The Ludlow Hut is reached by hiking uphill in snow for 5 miles. There is no electricity or running water. Just two wood-burning stoves and a large pile of wood.
Last year we had a great time celebrating New Year’s Eve there and everyone wanted a repeat experience. The guys had even built a snow cave where we toasted the New Year and which I actually slept in that night in my zero degree bag, nice and toasty.
Obviously I’m not capable of walking 5 miles, let alone uphill and in the snow. About a month ago, Stephen somehow contacted Candace Cable, a para in the area with years of experience sit-skiing and racing (and winning) wheelchair marathons. She won various Paralympics gold medals in both events and has titles everywhere you look. Candace was kind enough to talk with me for a while and walk me through all the possibilities of sit-skiing up to the hut. She also put me in touch with Jon, who she knew was familiar with the Tahoe Rim Trail and who also used SideStix crutches, like me. Here’s a cool video of him hiking that trail as a promo for SideStix. He’s over a decade post-injury, I believe, and far better off than me at this point.
https://www.youtube.com/watch?v=kjsM6GhiGso
It quickly became apparent when I talked to Candace that Jon was the same guy that I had seen before in that video. What are the chances? After seeing his video, I had high hopes of having a similar recovery. So of course I was very eager to speak with him.
Jon talked with me for about 40 minutes in mid-December and answered tons of hard questions. He’s an awesome guy. As he spoke with me, he was driving by himself up to a stream in Tahoe where he planned to kayak that day, despite the fact that it was 10 degrees out. My kind of guy! He gave me tons of advice, including something like, “Sit-ski uphill for 5 miles? Forget that! No way! Don’t kill yourself. I mean… I wouldn’t.” Haha… He ended the call offering to let me borrow one of his various SideStix attachments – whatever was necessary – and to pick them up when I got in the area. That helped a lot since they are about $200 each. Ones for snowshoeing, ones for hiking in dirt/ice, ones for sand… he’s got all of them and even helped design some.
When I met Jon the day before the hut trip, I was amazed to see him walking to meet me, unassisted. He said, “It’s an illusion,” and that he can only do that on flat surfaces with something to grab like a wall close by. Still, impressive. He happily lent me the snowshoe attachments for the crutches. I couldn’t help but notice he had tons of toys in the garage: handcycles, a kayak, snowshoes, tons of crutch attachments, and various other fun items. His wheelchair from the hospital was on a high shelf gathering dust.
So how to get to the hut? Sit-skiing would only work if I also tethered myself to one or more of the guys. But on top of that, there was apparently no snow in the Tahoe area, or very little. Maybe it would come soon?
After talking with Jon, about 3 weeks out, I reached out to a Tahoe snowmobiling group Leah had found online. I spoke with Duncan Lee, who heads up the group, and asked him if maybe I could rent one or get a ride up or something. Renting was $300/day… ouch! Ride up… maybe. But there was still no snow, so that wasn’t going to work anyway. Duncan swore he’d do anything can he could to help. He mentioned he helped out his friend that’s also paralyzed and he “gets it.” That’s when I learned that this was the same Duncan that helped Grant Korgan in the book Two Feet Back, which I recently finished. He is one of Grant’s best friends and they were together filming snowmobiling stunts when Grant took a huge 100+ foot jump and burst his L1 vertebrae. I couldn’t believe I was talking to this guy’s friend on the phone! So many connections…
Duncan did a ton of research and called a bunch of his friends to help me out. People were looking into whether or not we could just drive up in a jeep to the hut since there was such a lack of snow. Snowmobiling was out. 4-wheeling was too expensive. We even considered renting a mule.
We considered switching to a different hut that would only leave me with a 1-1.5 mile hike. Very difficult but maybe doable. But it didn’t work out because we’d have to go different dates and our group included at least 15 other people that had all planned for the set schedule.
That left us with the hope of driving up. The day before the hike we went to check out the trail. Rebecca and Stephen were to run up as far as they could to see if it was drivable, then come back to the car and report their findings. As soon as we arrived, though, a group of folks on 4-wheelers were heading onto the trail. “How far in can you ride those?” 10-15 miles or as far you wanted! Stephen asked, “Any chance you could come out tomorrow to give Chip a ride up to the Ludlow Hut?” Sure, no problem! Problem solved! So the next day at noon I jumped into what looks like a gator – 4-wheeler/dune buggy-type vehicle. Amazing how things just work out sometimes! PTL!
The ride up to the hut with Steve in the snow buggy (or whatever it was) was really fun. At first he was afraid of hurting me but when I told him the vibrations actually helped kind of massage my legs, we really made a good time of it.
Steve and I about to go up the mountain.
About halfway up, Steve mentioned how his family was leaving the next day and so he wouldn’t be able to take me DOWN from the hut. Hmmm… I had been thinking so much about getting to the hut that I hadn’t even thought about getting back down. Dangit! Panic set in.
We got to the hut with no problem. Steve went in and put my bags in the hut, said his goodbyes, and left. I stood there with my crutches and looked at 3 gnarly, icy, steps leading into the hut. What the heck? I hadn’t thought about those. They were completely covered by snow the previous year allowing us to just walk straight into the hut.
I took a risk I shouldn’t have and tried walking up to the top step using the snow on the side. At this point my crutches still had the original attachments and I had my Brooks running shoes on, since none of my other shoes fit my braces aside from my dress shoes from the wedding. I didn’t want to shell out $100 for hiking boots I’d rarely use.
I slid quite a bit but made my way to the steps. Holding onto the house ladder with one hand and carefully using the crutch in the other hand, I stepped onto the middle step. I slipped and almost fell. There was no way I was gonna make it up another step. Turning very carefully, I then sat on the doorway frame. It seemed the safest approach would be to scoot backwards on my butt down to the step in the hut and then onto the concrete floor. Then pull myself up onto the picnic table bench. I made it but it was a stupid risk. I should have just fallen into the snow outside and waited.
Well I lucked out when Micah and Jenni walked in, having driven their 4x4 most of the way up the trail. So I had a ride back down!
We had a great time in the hut. The guys helped me in and out of the hut. I even went up to the second floor to sleep, using a LADDER! At first it felt unsafe but the second time I did it, I barely needed help, and even descended on my own the day we left. Pretty cool. There were 21 people there for NYE, and 15 the next day. More games, hot cocoa, good food, good weather. I headed down with Micah and headed out on the 2nd. Thanks to all the guys for all the help getting around up there. It was really questionable at first but I’m glad I went.
Beagle and I by the frozen lake.
Trying out the snowshoe attachments. I also borrowed someone’s Yak Traks for my shoes which helped a lot in the snow and ice.
The gang.
The Beagle, Officer Chris Maier, and Brooks Beast - Deborah Maier
Rebecca and I even made it to Napa for dinner at a great restaurant, a wine-tasting during the day before flying home on the 3rd, and some good alone time.
Beagle and I at Black Stallion Winery. 70 degrees! (It is at this moment -12 F or so in Chicago).
Thank you all for your prayers. I’m more and more encouraged about both my recovery and how many things I can still accomplish in life. I’m paralyzed, or at least partially paralyzed from the waist down. Yet, I’m flying around the country. I can still sing in front of people - standing. I’m walking everywhere. I went up to a hut in the middle of the Tahoe mountain area that has no electricity and no running water. I’m peeing on my own more often than not! Life is good. 2014 will be full of amazing firsts for me. I’m meeting with someone from an organization called Dare2Tri this week to discuss doing a Half Ironman. Rebecca and I will probably get a dog soon. We are planning on leaving the country for someplace interesting at some point this year. Who knows what else? I hope your 2014 seems equally as promising. I mean, for me (and Rebecca), it HAS to beat 2013. It’s a given!
Here’s to a great 2014 for everyone.
Chip
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