After putting together my 2018 video I realized I never shared my first time skiing last April.

For the last few years I have made it a birthday goal to try something new — particularly something I’m afraid of like heights. I began this tradition when I permanently went into a wheelchair around 2011. As a result I’ve had some amazing adventures like skydiving over Sonoma County and parasailing over Torrey Pines Pacific coast. But, as I’ve been sharing, I’ve been under a lot of physical and emotional stress from the mysteriously growing list of chronic symptoms the past three years — symptoms separate from my genetic muscle wasting disorder GNE Myopathy (aka HIBM).

Last couple years I’ve been physically and emotionally down so I had decided I did not want to fulfill my annual “try something new’ challenge. It’s difficult to be yourself when your body is under the constant barrage of warning signs like chronic pain, debilitating fatigue just because and neuropathy like incessant itching. I’m now dealing with disability from two sources and it’s frustrating. My body is constantly screaming at me, and because of this I’ve sensed my spirit changing in a direction I don’t like. So I had no plans.

I recognize when I get like this I have to push myself even harder out of fear that I will end up being a person who doesn’t try and instead lives by their fears. So I’ve been doing everything I can to push myself to do things even though I would rather stay in bed with the curtains drawn. It’s hard, though. When it’s like this I just don’t want to be seen. I don’t feel like myself and pushing myself is getting harder.

But a fellow GNEM friend invited me to ski with a group he’s been adaptive skiing with for years. I believe the base of the volunteer group was born out of the VA (Veteran Affairs) where my GNEM friend is a doctor. He invited me to come along and while I said “yes” in the back of my mind I wasn’t sure if I was up for it. I was experiencing so much body pain from head to toe, and at the time recently recovering from a very bad six weeks of withdrawal symptoms from Cymbalta which was prescribed to block my pain. It didn’t work. But I had done some work at eliminating all the harmful medications I was on and doing my best to recover.

As my condition progresses, combined with this chronic illness, I’ve found I cancel appointments more often. I hate this effect of ill health. I hate being too tired or in pain to do anything. I feel like a failure even though logically I know it’s not me, yet what my body is doing to me.

But still I feel like some other person and in the back of my mind I’m alarmingly aware of the threshold and ease of giving up and not trying anymore, which is why I push so hard.

The weekend of skiing my pain just happened to be much lighter and manageable, but I still didn’t want to go skiing. I also didn’t want to cancel on my friend so I went. And I’m so glad I did.

One of my concerns with skiing was the cold. I’m deathly adverse to cold. Snow and the cold are my arch nemeses. It is why I moved to California.

As my muscle deterioration disorder progresses I easily get cold all the time, even in warm weather. All patients like me experience this. I explain why I’m so cold in a 2011 blog post. But in short, we don’t shiver. Shivering is a bodily function response to dropped temperatures in warm blooded animals. When the core body temperature drops, the shivering reflex triggers in order to maintain homeostasis. Your muscles that envelope your organs begin to shake in an attempt to create warmth through it's energy.

So my concern was my attention would be on how cold I was and not skiing. But the day was beautiful. The warm sun bouncing off the glinting snow caressed my face and body and I felt good.

The nonprofit Unrecables has been facilitating adaptive sports since the mid 90s.

I rolled up and met the group of Unrecables’ volunteers for the first time at the base of the snow.

Whenever someone new is helping me there is always a pause inside because I have to teach each new person how to handle me, which isn’t easy. But I do my best to put my patient teaching hat on and give them the confidence as I lead them through the process. Not every disabled person is the same and each one has needs that are unique to them including how they need to be lifted. But I was amazed at this group of volunteers. They lifted me and strapped me in with adept preciseness.

There are different adaptive equipments to fit different physical limitations. Paraplegics with upper body strength can independently use a mono-ski and poles. For myself I have a very weakened upper body and core so I used a bi-ski. As the volunteers fit each person into the ski buckets they are customizing that fit for each person. The volunteers quickly cut up and stuffed foam in the areas needed to customize to get a secure and comfortable fit. Quick customization was required even on the slopes. They also duct taped my hands to the rail since I no longer have the dexterity to grip. At one point I could no longer hold my neck up from fatigue, so they wrapped my scarf around like a neck brace which supported me on downhills. The whole strapping me in process took around 30 minutes.

As we headed to the ski lifts I could only think of two things.

Heights. Again.

I’m deathly afraid.

And two, with my progressed physical state how was I going to truly be involved with this sport? Would I just sit there like a mannequin while they  pushed me down the slope with fingers crossed?

As my new friends lifted my bi-ski off the ski lift and gently pushed the the nose down so I could slide onto the top of the beginners slope, I thought, “This is it. I hope that tree over there doesn’t hit me”.

We practiced on the beginners slope a few times until they felt comfortable taking me to the main advanced slope. What I found was the driving heavily relied on my physical participation, which led to an instant connection to skiing. I was actually involved in dictating the movement of my bi-ski which made me feel excited.

Now, at all times I had about six volunteers with me. One person was always behind me guiding with straps and the other volunteers would ski ahead and around me like a force of protection. The person behind me has two straps that control the bi-ski. The closer the person is behind me (short straps) the more they are helping. The farther the person is (longer straps) the more I’m exerting my force and in control.

My main focus was turning my core and neck/head towards the direction I want to move and keeping balanced. It sounds easy enough but it took much physical effort and concentration to maintain control. But I was overwhelmed by this small nugget of independence. It’s so difficult losing independence so these small independent moments are appreciated — more than any able-bodied person could imagine.

I was in love as we went down the shimmering slopes again and again. The cool mountain air blowing in my face as my speed picked up — it was a way I haven’t been able to experience the mountains and I appreciated the vantage.

It’s been at least two decades since I’ve played in the snow so memories of myself as a child playing on the sled kept popping up throughout the day. My favorite part of the day was hitting the downhills on the more advanced slope at 30mph. It reminded me of hitting 30 mph on 2016 Bike for Kam tour down Big Sur.

I was incredibly thankful to these volunteers and all groups who make sports like this accessible. They can only imagine how much it means for us to live life like everyone else does.

At the end of the day I was tired yet fulfilled and happy. The adrenaline made me forget all my bodily issues and I soaked up every minute I could. I felt accomplished.

Post skiing the Unrecables’ volunteers invited us to their traditional monthly dinner. When we arrived at the hosting condo there were at least 30 people moving throughout the kitchen and living room  as they set up for a feast. I was amazed at how lovely, friendly and close this group was. As I mentioned this group is volunteer based and many of them have been volunteering every month for years. That night felt like a midwest moment. Lots of food, friendly people and comradery as we watched ski footage from the day and regaled slope tales over welcomed hot plates of food.

The group meets every third weekend from December to May. Volunteers ski free for the weekend. The membership cost per year is $40 and you can go any weekend the Unrecables are there. This group is always looking for volunteers so if you are interested please reach out to me or them at: www.unrecables.com

After a weekend of skiing we stopped at a few sites on our way home, including Convict Lake. At Convict Lake there is a gorgeous little accessible parking lot right next to the lake. Not too far from parking there is an equally gorgeous trail wrapping around the lake and area. I captured some of the footage so you could see how beautifully accessible it is. Excuse the wobbly footage, I have wobbly hands ;).

I use words like “beautiful” and “gorgeous” because when you live in a world that isn’t built for you, you appreciate areas that are accessible that much more. Even a tamped down dirt road would suffice. Get out there and explore, even if it’s rediscovering what’s outside your back door.

In a couple weeks I’m turning 40 and I do plan on trying something new 😊. Being disabled is difficult but it helps to focus on things you can still do in spite of it. A year ago today Stephen Hawking died so I leave you with his words:

 “My advice to other disabled people would be, concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with. Don't be disabled in spirit as well as physically.”

— Stephen Hawking

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