A breakthrough happens the moment you make a new choice.
Nick makes it look so easy, doesn’t he? I mean, even I can forget that he’s in a lot of pain and struggling just to do the little things. He’s a hard charger, and life is getting easier, but we still haven’t found the intersection of pain free life, acceptance, and ease of daily living.
I’m not trying to complain, or bitch, or attract sympathy, I just feel like keeping it real tonight. Life is still hard, and will always be hard for Nick. Period. Even the occasional skydives, or trip to the go-kart track, or any amount of Reese’s peanut butter cups can erase this truth. In fact, Nick participating in “normal” activities again only accentuates the fact that life is fucking HARD. Every. Little. Thing. Is. Difficult.
We made a few jumps last weekend and by the end of the day I could feel the exhaustion pouring from him, but I doubt anyone else noticed. He packed his own parachute, carried his gear from the landing area, and fell down on a few landings. He even fell on the packing mat in front of everyone, but brushed it off like it was nothing. That kind of stuff doesn’t embarrass him, but it still sucks. Falling down on his knees not only hurts, but it puts holes in the liners of his prostheses and ruins the vacuum seal necessary to keep his legs secure. He’s going through liners like crazy.
I’m insanely proud of my man. He is pushing through life, trying to grow and progress and gain as much back as possible, all the while navigating the emotions that come with the territory of dealing with a permanent injury. It’s been a year and nine months. We can’t really remember how life used to be anymore. All over our house I see old pictures of our old life and strain to recall a recent time as carefree, fun, or innocent as those times. Our old life feels like a childhood memory, our present life feels like a dream, and the future is a blank canvas with a somewhat limited color palette to choose from.
I’ve printed some photos from this last year and framed them, but they’ve yet to make the wall. It’s one thing to live our new life, to write about it, or talk about it. It’s another thing to frame the proof and look at it on the wall everyday next to all the proof of other good times we’ve had. Not sure why I have a mental block about this, but it’s there.
Nick has been finding meaning through helping people. He’s been back to Ballard a few times to meet patients and listen to their experience. At that stage in their recovery they’re just looking to be heard, to explore their feelings about the future, and meet other people who can prove to them that life will get better. Nick hasn’t been able to volunteer at the hospital yet, but hopefully that program will get running soon. He’s also developed a few good friendships through his desire to help. He’s talked to several people on the phone, and has made a good buddy locally who recently got hurt riding a dirt bike. Last week Nick brought him food, then on the weekend he picked him up and they went to watch moto races together.
Here’s some pics from the last time we went skydiving. I’m trying to get him to prioritize having some sort of fun every day. If he’s going to be in pain no matter what, he might as well be enjoying what he’s doing while he’s hurting. And if he’s having a good enough time, it can temporarily distract from the pain and reality of his injury.
I have some reflecting to do about our week of stimulator trial hell. Sorry for the repost, but the other one got lost on my end.
What a miserable week for Nick, dealing with the two wires piercing through his skin, the giant box taped to his back, the screwy programming of the actual unit, and the realization that it isn’t the saving grace we have been imagining for the last year.
We spent an entire year building up to this. We got a first opinion. We got a second opinion. We got a THIRD opinion. We’ve had many appointments just discussing the stimulator, have talked to other patients, manufacturer reps, and done lots of reading on the internet.
The results are disappointing, yet somewhat intriguing. It produced a pleasant sensation, just not where he needed it. Our experience with this damn thing kept us guessing all week, and ended with Nick yanking it out himself because the surgical site was getting infected.
The jury is still out about whether he will get it permanently installed or not. It helped a little to distract his brain from the phantom and nerve pain, but it didn’t actually help with the pain because he couldn’t feel it where he needs it: in his butt, hamstrings, and especially his feet (you know, the feet that aren’t there, but still haunt him daily). A week later, he still can’t decide if that mildly pleasant sensation and half-assed pain diversion is worth going through with having the surgery and getting the device permanently implanted. The surgery involves general anesthesia and a partial lamenectomy to remove bits of his spine to make room for it. Ugh, another fucking surgery.
In the meantime, his phantom pains are OUT OF CONTROL again, particularly at night. He’s sleeping like shit unless he takes pain medicine, and some nights that doesn’t even help. A sleepless Nick = a grumpy, irritated Nick. Thankfully the last few nights he has taken enough medicine to sleep soundly through the night, and put his cheapy vibrating TENS unit on his stumps prior to falling asleep to help distract him.
To me, him taking an extra pain med at night is worth it to assure he is rested and energized the next day. For him, he’s trying to take as little pain medication as possible with the hopes of getting off it all together some day. And that was the point of the spinal cord stimulator, but it’s clear the stimulator can’t replace good ol’ oxycontin for an injury as severe as Nick’s. A bummer for so many reasons.
This photo is so romantic… me and my love painting pottery together.
We took a friend out for her birthday this evening and as I expected Nick loved painting pottery. It’s so meditative and relaxing. We were there over three hours, and he said he could have gone at least one more.
He’s been having a lot of frustrating and relentless phantom pains lately, and I think painting offered him a rare chance to “zone out.”
That, and he now has a special bowl to eat his oatmeal from every morning. Awwww, how sentimental.
Well, we may not subscribe to, or partake in, traditional Valentines nonsensical spending and crowd navigating, but I sure am lucky to have such a special Valentine to share this random Thursday with.
Whether single or spoken for, happy or miserable, I sincerely wish all my family, friends, and fans a beautiful day of inner peace and love for life.
Don’t take things so seriously, be patient with yourself and others, say thank you, and smile. Spread some love today and everyday, even if you don’t have a Valentine. Happiness comes from within anyway.
Can you believe it? Nick may not be back to normal yet (what is normal, anyway?), but he and his lead trainer decided it was time to move on. A bitter sweet accomplishment.
After exactly one year of making the hour-long drive down to Project Walk three times a week for Nick’s two-hour grueling sessions, Nick did his last workout with Bri. There was a mini celebration, lots of hugs, and tons of pictures and video being taken.
During the actual workout they tried something new with Nick that completely blew us all away. Nick ran across the floor for the first time ever!
Here is a link to a video of Nick running. (Forgive me if the video is messed up at this time. If it is, I’ll work toward getting a different video posted as soon as possible.)
The harness he’s wearing is not holding him up, it’s just for safety, and he did end up needing it once or twice during his first attempts. His new feet with more springy toes and new sockets that attach with a vacuum system have made it much easier for him to be steady on his feet. I’m pretty sure he could not have run like this with his old legs and feet.
Nick still has a long way to go to rehabilitate his body and get stronger, but we’re confident we now have the foundation and the tools after working with Project Walk. He’s doing his own workouts at home and with a local trainer. He’s on the treadmill or stationary bike almost everyday and has worked up to a mile and 3/4 without stopping on the treadmill. His next goal is to complete a 5k race in a few months. It helps to have a goal to keep you accountable, something beyond just “getting better.”
Driving away from Project Walk that day was sad but exciting. We were quiet in the car for a while, digesting the magnitude of what just happened. It really feels like only a few months ago that we were giddy with anticipation of his first session and what amazing changes it would bring to our lives.
Looking back at a year spent at Project Walk ignites a fire of gratitude for me. Not only was it a hefty investment that we’d make ten times over again, we know it wouldn’t have been possible without all the fundraising from our friends and family. What a privilege to be able to afford such leading-edge therapy and do whatever it took to get Nick’s life back.
I’m grateful that Nick was able to see an “end” to his therapy at Project Walk at all. That he can be mobile enough to no longer require their specialized facility. That he can workout here at home on his own and work with a more local personal trainer as well. I can’t help but smile when I feel Bri’s encouraging words dance through my mind, “Nick, you’re now less like a person with a spinal cord injury, and more like a weak able-bodied person.” Every moment is a reminder of how far he’s come.
Without Project Walk, I don’t know where we’d be right now, but I’m confident it wouldn’t be here, staring eagerly into the future, delighting in the countless possibilities to chase and create. Feeling joy in the unknowns, rather than confusion and sorrow.
Thank you Project Walk, Eric, Bri, and everyone who made us feel at home every single day. We will miss you guys!
Well, Nicks birthday has come and gone. He’s 35 now. He says he’s at the half way point now, but I recon he’s more than half way done. I can be so mean, huh!
Since Fener doesn’t like to make a big deal about his birthday I decided to finally honor his wishes and keep it low key for him. He wanted so badly to jump but the weather wouldn’t cooperate, so we raced go karts instead. Only this time I didn’t let him win!
Scaling a wall was not easy for him. He didn’t get too high, but he gave every ounce of effort. One issue he faced was lack of leg strength. This means he was hanging on his arms and shoulders too much which exhausted him even quicker than expected. He also can’t flex or rotate his ankles to get good placement on the climbing wall holds and pegs. But even so, he somehow crammed those rigid plastic feet of his into some tight climbing shoes and went for it.
My favorite part was observing the reaction of the other climbers. They watched intently as Nick struggled and slipped his way up. I could feel their respect.
The manager of Threshold, Doug, personally assisted us with a refresher and helped to get us on the wall. He does a lot of work with adaptive programs that help amputees and other disabled people rock climb, and gave us some killer local resources we hadn’t heard of before. And to top it off, Nick got an unexpected email from him a few days later offering to take us outdoor climbing in Joshua Tree this spring. Thanks Doug!