In Way Too Deep

            

Early in May I received a text from Jason Dorais asking if I’d like to photograph his wedding to Stacey Pearson June 6th. Broken, tired and breathing through waves of pain I smiled. Over the last two years I had watched from afar their relationship grow. I’d known Jason for years. First, from reading of him during his track days in college, and then later in person through work and play. Stacey, I didn’t know as well but recalled a shared indoor bouldering session last fall. There was a brief talk about loss of people we care about and then I asked about how she and Jason began. Something about how she showed Jason up on a problem in that very gym. I knew them both to be good folk and couldn’t help but be happy for them and a shared future together. I typed out a text response gracefully declining then paused before sending. Eyes closed I tried to imagine what it might be like. Beautiful, sincere, filled with joy and fun, I saw a day unfold perfectly then out of nowhere a dark cloud of pain grew and cast despair. If only the pain wasn’t quite so bad, then maybe, just maybe. Eyes open I erased my response and asked for a few days to consider.

            

At the end of last year my cousin Kleinne Ponath had asked if I could photograph her daughter Jenna’s wedding June 13th. I’d had the privilege of shooting her two older daughter’s weddings and was tickled at the idea of another. Soon after my accident I wasn’t certain where I would be physically by June so asked Kleinne to check back around the beginning of May.  She did the day after the inquiry from Jason.

            

Full disclosure, I don’t consider myself a wedding photographer. I have, over the years, shot a couple dozen, but that equals about two each year. A number that keeps me fresh and excited. Each one has been a great experience and I wouldn’t have it any other way. It’s the same way I feel about all the other work I do. I want to be excited. I want to be there. I don’t want to be burned out, stressed, and quickly approaching deadline. I want to slow down and share that time with the others involved.

           

 If I said yes to one wedding I felt compelled to say yes to both and I wanted to be healed enough to be able to do that. It might just be the perfect kick in the ass I needed on my road of recovery.  Following up with Jason and Stacey I thanked them for thinking of me and let them know the one requirement was to allow me to have my younger sister Ruth join as an additional shooter to help fill in the gaps and cover my ass if and when I hit a wall. Kleinne and Jenna, the same deal. Of course they all agreed and I was immediately in way over my head.

           

 I will spare you the details of each wedding and say ‘yes, I was nervous at the beginning of each day,’ and ‘yes, it was difficult for me,’ but work has always been like that. These opportunities left me with way more than anyone will ever know.  Both were beautiful days filled with joy and happiness. And as far as I can tell, Ruth and I were successful.

Field Trips

I went for a mountain bike ride last week. When asked by a friend if I had any news to share it took me several hems and hahs that I had done so. Apparently that was news.
At the encouragement of Brad Barlage I reached out to the folks at Trails (the same folks who have lent me a road bike) about borrowing a mountain bike. After consulting with my doctor, who was pretty adamant about where I could and couldn’t ride, a team of three from trails met me later that week. I am still on restrictions for activity so the team had pre-ridden a couple fo trails and recommended we start on a short section of the Bonneville Shoreline Trail east of the University of Utah.

With Jacki, my PT Ane Robinson, Brad Barlage, and Chris “Commander” Magerl in tow, we met up with Keegan, George, and Bryan from Trails. For a few short laps we all soaked up the day by cruising and sharing as we rolled up and down in an open space that separates the city from the hills. Is it hard? As nails. Is it fun? Yes. And can I see myself getting into it? Absolutely.

Update: PT and OT continue. Gardening, car transfers, photography, shopping, floor transfers, curb bumps, etc. Our sister in law, Andrea Shuman, visited this week, offering help around the house, with bodywork, and deeper conversation. Follow up visit to the surgeon that told us everything is healing well. Tried to cut out one of the heavier painkillers from the routine and failed.

Failure

Last week it happened. I missed my chair while transferring from the shower bench. For the first couple weeks home I would call either Jacki or Miriam and have them join me in the bathroom to spot. Most times it happened without a hitch, but every so often I would spring forward a bit too far and drive my head into their chest. They would then catch my naked body and guide me gently back into the chair. I worked at it over and over to point of not calling for a spot and after more than two weeks with no spotting you might say I was on my way. On that day as I began my bowel and shower routine Jacki headed out for her morning run. I pooped in a very hands on kind of way, cleaned that up then showered. Afterward I toweled off and bumped my body/butt along the transfer bench toward the wheelchair . I paused to spread a small towel over my seat cushion then positioned my feet and hands to make the second bump onto the chair. Placement of every part of my body plays a huge role in any successful transfer. One, Two, Three! I felt my self springing up and suddenly too far forward.
&%*@!

I closed my eyes waiting to hear the sound of flesh and bones crumbling onto the tiled floor. A moment passed. And when it didn’t come my eyes opened. Somehow I’d grabbed the wall bar in front with my right hand and my chair with the left. My clean body hung suspended in the middle. After a few moments of trying to will myself to the chair defeat was admitted. I lowered to the floor, propped my back against the wall and positioned a towel beneath my boney legs. There was time to burn before Jacki returned. Thank God somebody chose to install radiant heating in the floor of the bathroom.

There are a few photos on Jacki’s phone that show the surgery on my spine. The skin of the back is stretched open in one long incision revealing a bloody assembly of muscle and boney spine. The photos are a solid reminder of the damage inflicted and the involved procedure to help repair it. This idea in my head that I might soon be pain-free is kind of silly. Broken bones need time to heal and even then may be sore for more. I keep running this thought through my head so that it might one day stick.

Jacki came home and scooped my withered body off the tiled floor then wept. I cried too. This new life is hard to swallow at times.

I, we have been exercising daily, alternating between strolls in the wheelchair and rides on the bike. Therapy continues and strength comes with it. We have added dry needling from Esther Smith of Grassroots Physical Therapy which has loosened muscles allowing more movement making general living easier. Chris “Commander) Magerl, a steady biking companion and long time friend, was kind enough to lend me his film camera kit. So thanks to the prompting of Dave Clifford I have started making images the old fashioned way. Stay tuned.

Pity Parties

I felt the tears run down my cheeks before I could stop them.  Wiping them away I bit my lip and closed my eyes. My mother’s voice rang clear in my head. “You have been given way too much to start feeling sorry for yourself. It’s okay to feel the loss, the immensity of the struggle, the amount of work it takes, but you CAN NOT feel sorry for yourself!”

In the previous moment I’d had a “Poor Louis” moment. My back muscles were revolting and I allowed the whimpering to enter the scene. Poor me, my back hurts whah, whah, whah… Catching the moment quickly my higher mind jumped in and Mom’s presence offered comfort. In my head I apologized to my deceased mother and father, to living relatives, friends, and supporters, then I spoke aloud to Jacki. “I’m truly sorry about that.”
I’d love to tell you that every thing is easy and I am soaring to a rapid recovery with a hop skip and a jump and smiles are around every corner, but that would be incorrect.

This road is rugged. Pity parties happen and then we move on.

Update: Progress is still happening. Daily. With Miriam gone home it’s just Jacki and I and so far so good. I had a few follow up appointments and the doctors assure us we are making great progress. At home therapies continue with about six hours of PT and six hours of OT a week. Bumping curbs, transferring in and out of cars, grocery shopping, yard work, and field trips. We will continue with these at home visits until the COVID status improves some. The we will transition to out-patient therapies at their locations.

Last Monday the folks at Trails, part of University of Utah Health program fitted me we a loaner recumbent hand bike. Since their weekly outings have been canceled they wanted to get equipment into out hands. Yes, pedaling a bike with your arms is harder than your legs, but have you tried pushing a wheelchair around? It is amazing and having only been on a few outings I am thrilled by the ease and cardio effect. We will see where we can go.

Yesterday we received a grant from the High Fives Foundation to help with out patient PT! So psyched!

See you out there,

Louis

I am a Mess

I’m a mess. What else can I say?
My new norm is, well new and unknown. I have no real idea how or what I am capable of so we enter each day pensively. This state has me doubting my previous perceptions of independence.
A few weeks back I was wrestling with needing help from Jacki, Miriam, or anyone nearby, and wishing I could do more things myself. I would ask for help, immediately regret it and feel a sense of shame. How can I be an equal and giving partner in my marriage, as a brother, friend, father, etc. when physically I don’t measure up? My moods would shift and Jacki, being closest, received the blunt end.
I then participated in a virtual outdoor adventure through Adventure United and set the intention of exploring the idea of independence vs. dependence. I joined a group of online fellows who despite living in the restrictions of the COVID world were game to gather once a day to share their daily experiences having adventures within these limits. Unsure of how much I would actually participate I was surprised by feeling motivated by the group to have any experience I deemed worthy without any judgment. I could find my experiences through reading, watching a documentary, staring out a window or, if I had the energy, going outside.
On day one, our friend Rob Beers stopped by to paint the ramp leading to the front door with textured paint. This was adding safety to my path home. Many thanks Rob.
 That the ramp leading out allowed me to come and go independently and having to avoid it for 24 hours made me immediately dependent on others to get me out of the house. As Jacki and Miriam bumped me down the back steps we heard birds chirping. Maybe four different calls. I contemplated the birds dependence on the seasons to where they call home. Then the thought that they depended on the worms, insects, grubs to keep them feed and nourished. We felt the wind rushing by, moving through the trees, the back patio, hitting the house and escaping to the front yard. What does the wind depend on to make it go on? As we strolled slowly from the house more questions and realizations presented themselves. We depend on the roads we travel on, the grocery stores for food, the infrastructure to have comforts of home.  So much depends on many things and people coming together. This idea expanded on and on.
The Adventure at Home days flew by. I found more energy and made connections with other people finding beauty in exploring this new world. My meditation on independence vs dependence has given me a broader view on my current position. I may need more help than I used to, but in the bigger picture it’s only slightly more than everyone else.
Yes, I’m a mess, but I have always been and I’m sure I’m not alone.
Checkout Adventure United to explore opportunities to connect deeper with going outside in a safe and supported environment that will simply make you feel good regardless of skill level, experience, or fitness. I mean, I did it in a wheel chair!

Uncertainty

I am unsure right now. Actually, I am unsure most of the time and it’s a feeling that has been with me my whole life let alone after becoming a paraplegic. I don’t like the uncertainty.

I also don’t like the little bumps along my road to recovery. I want to be strong and shrug them off, but at times it’s difficult to find the strength.

Here’s the truth. Everything is slow now. Daily routines take forever. I have bowel and bladder accidents once or twice a week. Last week I had my first Urinary Tract Infection – this manifested in increased pain and decreased energy. Some days I sleep well, others I stay up with pain. My back is knotted so tightly that it feels like muscle is being torn from the bone. And I don’t feel confident being alone.

My list of uncertainties and insecurities prior to the accident is twice as long. Every where I go there I am. And as before I still find moments of joy and beauty.

A successful transfer to or from my chair, a note from a friend, a squirrel in the yard, the wind in the trees, the sun on my face, the smell of sage, and my forehead pressed into Jacki’s.

Where will this all lead? I have no clue. I am just happy I still have the opportunity to be here.

This week’s update:
Jacki and I are well. She’s been a rock star. I do my best to keep her in my positive mind. Miriam (my sister) has been a welcome help with not only me, but around the house too (she repaired our furnace).

I am getting stronger, navigating the house well, continuing our daily outdoor strolls. The UTI cleared up with antibiotics, we proved that I can still sweep and cook, I still have a hard time getting dressed in the chair – pants, I prefer to get dressed in bed, I broke my brace in two places during PT, repaired brace with duct tape, the pain is down but at times it ca still be up, car transfers are a work in progress, and I’m feeling more motivated to make new images.

See you out there,

Louis

I am ready to go… but not really

When I woke in the hospital post surgery I was acutely aware that I no longer had use of the part of my body below my arms. At the time it didn’t really phase me. I mean, I’d seen people in wheelchairs before. I knew that they got around well and some were doing incredible things. So naturally I thought I would pull the numerous tubes from my body, hop into a chair and get to work. For some reason I was certain I would be creating more images right away and those images would be more relevant than ever before. Then I was going to visit all the people I knew giving out hugs and letting them know how they influenced me, and also spend time with family and friends. There was this drive to put all all my effort and energy into creating positive change in the world. The reality was I wasn’t ready to go.

The accident was traumatic. Not only had I fractured several vertebrae and severed my spinal cord, I had broken ribs, collapsed a lung, scalped my head, received a concussion, and come to the Hospital in a hypothermic state, and for the record driving a wheel chair, and moving around with only the use of my arms is not as simple as one might think. None of these things alone do you just stand up and walk away from. Or in my case wheel away from. The truth was this was going to take time.

I struggler with this daily. I want to be out there creating, connecting, and being, but the truth is it’s going to take time before I am up and running…

Status report – I came home Tuesday March 31, 2020. I heard birds chirping outside my window and cried. I have been sleeping the best I have since the accident. My sister Miriam has come to help Jacki with the caregiving. The modifications that have been done to the house are incredible and the folks that donated their time are amazing! We can’t thank you enough. I have started at-home therapy and will continue to until out patient is available. Everyday is filled with ups and downs, the downs can be pretty low, but I am supported by family, friends, and complete strangers, and it all contributes to noticeable improvement every day. I am still blown away and humbled by the extensive care. That’s it for now. Many, many thanks.

See you out there,

Louis

From Scratch

Having a spinal cord injury is not unlike becoming an infant again. Jim Harris gave me this analogy and it feels more appropriate than my explanation that I am starting over with a new body. While I still have use of my arms, hands, upper back, chest, neck and head using them to move the rest of a limp body is somewhat perplexing.

Sitting up in bed without a core is a little less graceful, sitting up to a table to eat a bit more challenging, carrying things… Most activities require a different method and I have no experience with any of them thus my status of infancy state. Luckily, learning happens a bit faster than infancy and the team at rehab is a wealth of information.
Overall this learning experience has been a total trip and sure to continue for years to come.
Turned a corner earlier last week. Not sure what that corner was, but with each day the pain has reduced slightly, my movement appears to have improved and confidence has been building. Made a trip home to evaluate things and it went smooth. I got up the ramp, hopped through the front door, simulated using the bathroom, cruised around the kitchen, transferred onto the couch, onto my bed and all without much difficulty.  Discharge is coming soon. Maybe, just maybe I will be ready.
Cheers,
Louis

This is Hard!

When I woke up after the surgery, surrounded by friends and family, I had the acute knowledge that I had lost the ability to walk. It wasn’t scary, it just was what it is. All I knew was I had work to do and without or without sensation below I needed to get to work. Reality was completely different. I had to recover.
The biggest challenge I face now is managing pain and doing my daily PT and OT sessions. Despite having feeling in a small portion of my body the pain fills up rooms. Despite being somewhat fit before the accident I am in no way in shape to move myself with what I have. As we celebrate with each new movement learned I have to rest constantly and each new day I wake up stiff as a board with the aches of my injury joined by the soreness of tiny muscles waking up from never had been used in this way.
Knots, cramps, are constant. I cry a lot. While I have done some challenging things in my life up to this point this one takes the cake by a long shot.

Okay, enough about my pity party. I am truly grateful to be where I am and look forward to accomplishing those crazy dreams I woke with. I also want to say to everyone out there send great energy our way, Thank you. Thank you, Thank you. I am not sure what I did to deserve such an outpouring of love, but it has made a huge impact. I only hope to one day be able to share my gratitude in person.

Best!

L

My Injuries

This accident has some real lasting consequences. I arrived in the hospital hypothermic, scalped, concussed, collapsed left lung, a few broken ribs, several fractured vertebrae, and a complete transection of the spinal cord at the thoracic 4. That final one is the one I will not walk away from.

My scalp is healing remarkably well, my concussion slowly fading, my lung getting stronger, my ribs will heal and the vertebrae will also heal. The spinal cord, however, is finished, complete, history.
What that means is I have no feeling or control below my nipples. No core, abs, or trunk control. Not ideal, but I do have complete control of my arms, biceps, triceps, shoulders, some lats, and scapulas. This means I have lots of opportunities to move my body below the nips around. This also means I will be in a wheelchair. Kind of a rough reality, but something I will gladly accept for another chance to hang with all the beautiful people in my life.

Waking up after surgery without the ability to speak due to a breathing tube, I was acutely aware of the paralysis. It didn’t seem to bother me. I was just so overwhelmed with love from all the faces surrounding me. Granted I was  in and out of consciousness often in the ICU but now, going into my second week of rehab reality is steadily getting heavier and heavier. This is the single hardest obstacle I have ever faced. And to be honest the pain is overwhelming. Regardless, I can see a bright future ahead and while I want to hop right over to it, things are going to take a ton of work before I get used to this new body and navigating this wild and crazy place we call home.