Sharon McKeeman Blog » Blog

Masthead header

CLICK HERE TO GIVE

Two years, two months, and fourteen days ago I went for my last run. I’m glad I didn’t know those strides were my last because it would have ruined the joy. After my leg was paralyzed by acute compartment syndrome every part of my life was rearranged – I lost the outlet that was running, and I felt like an outsider in every social setting. It doesn’t mean that was my worth, but the transition from able-bodied to disabled is not an easy one no matter how quickly or slowly it happens.

I wasn’t sure how I would keep my spirits up, remain active, or find community again. My friends were supporting and caring, but none of them could understand what I was going through or help me find any solutions. However, I wrote this post one year after losing my leg, sharing stories, photos, and videos of the joy, motivation, and adventure I eventually found through adaptive sports. At the center of all of this has been The Challenged Athletes Foundation. CAF showed me that I could not only be active, but I could compete. They showed me I’m not alone, but instead I’m part of a vibrant community.

July 2019 one year after my injury, Challenged Athletes surprised me at the Legacy Triathlon with a grant for a hand cycle so I could go from swimming in triathlon relays with my family to doing entire triathlons on my own. I promised CAF I would return to the Legacy Triathlon in 2020 and race in the Paratriathlon Nationals. While we waited for the grant period to order my hand-cycle CAF loaned me a cycle and a racing wheelchair so that I could complete the San Diego Triathlon Series and place second in the Challenged Athlete division. CAF became a second family to me – a group of able-bodied and disabled individuals living life to the fullest and always finding creative ways to keep moving.

Unfortunately 2020 looked much different than any of us could have imagined which means I didn’t get a chance to keep my promise to return to the Legacy Tri a year later to race. When the pandemic hit, the goals and events that had kept me motivated and connected with community began to be postponed and then cancelled. One of the race companies has had to shut down for good at this point. The YMCA that partners with CAF to offer memberships to challenged athletes had been a weekly respite for me as I swam with an awesome masters group, watched my daughter in dance class, worked out in their gym, and chatted with friends. Everything that had helped me navigate my new normal as a disabled woman was cancelled, closed, quarantined. All while being told this pandemic was our new normal with things like seating and wheelchair ramps blocked for social distancing reconfiguration. This spring took me back to those early days of feeling so incapable, burdensome, and ostracized when I was first disabled.

But then CAF launched a cycling group, started getting ready for their 2020 Community Challenge, and celebrated with me as I found out that I had been approved for a robotic Ottobock C-Brace. Those things didn’t fix everything, but they let me know that someone cares what a pandemic looks like for those with disabilities and that even though I can’t high five my fellow challenged athletes at a triathlon this summer and fall, we are still working hard on our goals collectively.

Then in July CAF transitioned their grant from a hand-cycle to an e-assist bike since my robotic brace has a biking mode that makes it possible for me to ride an upright cycle. Almost two years to the day of my injury CAF made it possible for me to bike down to the beach with my family. Talk about coming full circle. This has been such a difficult journey, but I’m so thankful for every treasure along the way.

Thanks to CAF I’m biking daily with the rest of my family and my daughter on the back of my bike. The powerful electric motor enables me to keep up with my teenage sons even up the steep hills near our house, and at the same time since it is a pedal assist cycle I am able to use the gears like a typical bike and really feel like I am cycling as I press through the pedal stroke with my good leg.

CAF has transformed my life, and now I’m calling on you friends. Can you help support this community whose members are motivated but struggling during this time? Disability is a meaningful experience, but it is also difficult and isolating. This pandemic has stretched everyone thin, but the disabled community is even more vulnerable due to healthcare needs, underlying conditions, need for in-person support, income inequity, and more… This year CAF can’t hold their yearly Best Day in Tri on La Jolla shores where they raise money to fund crucial grants for adaptive equipment and other resources. Insurance may cover a standard wheelchair or prosthetic, but they will not cover racing chairs or running blades that help disabled individuals stay active and healthy.

The 2020 CAF Community Challenge aims to raise 2 million dollars by October 18th which just happens to be my birthday. They are running, biking, and moving as many miles between August 8th and October 18th as they can. So far I have put in almost 100 hours and traveled almost 500 miles. If you can help support this challenge, it would be an awesome birthday present!

You can join the challenge here if you would like to get moving with CAF and raise funds OR you can give via my fundraising page. Even $5 helps and if just 50 people gave only $20 each I would meet my goal of raising $1000 for CAF. This is a difficult time to ask people to give because I know we are all struggling as many are just trying to keep their small business afloat or balance distance learning with careers. However, I believe in this cause because I know what CAF did for my life and even a few dollars spread over a group of those who follow me on social media could make a big impact.

CLICK HERE TO GIVE

Why is your support so crucial?

Most medical insurance does not cover adaptive sports equipment which costs thousands of dollars; they deem these “luxury” items. CAF believes sport is a right and works to overcome this economic barrier.

CAF believes >

  • Participation in sports at any level increases self-esteem, encourages independence and enhances quality of life.
  • Sports and an active lifestyle are a springboard to success in life.
  • Sports and an active lifestyle should be accessible to EVERYONE.

CLICK HERE TO GIVE

More Challenged Athlete Stories

Cost of Running Prosthetics and Sport Wheelchairs versus Insurance Coverage

CAF’s Operation Rebound Supports Wounded Veterans and First Responders

Please get involved in whatever way you can, moving, fundraising, giving, or sharing on social media.

Thank you friends from the bottom of my heart!!!

CLICK HERE TO GIVE

I don’t have my first difficult steps with crutches on video as I learned to use the C-Brace, but the clip below is just a few hours later as I showed my family my robotic leg. Since then I have gotten much smoother although the swagger was kind of awesome. The next two videos show some of what I can do today in my C-Brace – full body workouts, and walking on the beach with my family.

Two years to the day after compartment syndrome went undiagnosed and paralyzed my leg leaving me unable to walk and in a wheelchair – I received my C-Brace from Ottobock.

After trialing numerous braces and exoskeletons, and going through a high-tech fitting and calibration process with Ottobock I walked out of my orthotist’s office with a new leg. It was an incredible feeling to walk up to our home and know that the C-Brace was going to restore my mobility and life with my family. My children gathered around in awe as I walked with a normal gait across our porch. They had grown used to their mama rolling in a wheelchair, swinging on crutches, or hiking a full fixed leg brace from the hip like a pirate.

Ottobock describes the C-Brace as a microprocessor-controlled leg orthosis that responds to everyday movements and situations in real-time. This helps ensure the safety, stability, and confidence in user’s everyday lives. The C-Brace allows people with paralysis in their legs to walk on uneven terrain, go up and down slopes and inclines, and take the stairs one foot at a time, step-over-step. C-Brace users can enjoy activities with their families and friends, and experience life in a completely new way. Or as my kids say, “My has a robot leg and she can do stuff with us again!”

Friends, many of you have asked me to share more about what my challenges have been after my leg was paralyzed, how the old-school braces I have been using feel, and how the C-Brace works. This short video is an awesome look at all of that!

So you ask what can I personally do in my C-Brace?

Wear it all day long comfortably? Yes!

Walk with a normal gate? You bet!

Hike up and down uneven terrain? Yep!

Squat and lift weights? Sure can!

Walk on sand? For sure!

Stand for long periods of time? Yup!

Ride a bike? Yes!

Do yoga? Yay!

Move between different activities with the same brace? Definetly!

Ditch the wheelchair? Yep!

Sit down and stand up gracefully? Yup!

Go crutchless? For sure!

Wear shoes that I like? You bet!

Stop worrying about falling in public? Yay!

Get asked daily if I feel like Ironman? Sure do 🙂

This journey has not been easy, but I’m thankful to celebrate such a life-changing milestone with you, and I will continue to share my activities and accomplishments in the C-Brace.

My next post will share about another activity that the C-Brace has empowered me to resume – upright cycling. As many of you know Challenged Athletes Foundation set me up with a hand-cycle to use and upon getting the C-Brace they gave me a grant to get an e-cycle that I use daily to bike with my family. I can’t wait to share more with you…

100 years ago today some women’s right to vote was officially ratified in the 19th Amendment to the Constitution. Over time the right for more and more women to vote was secured. We are women – has our roar been heard?

I am hearing from you mamas and sisters, and you want to know what you can do in 2020. It feels like casting a vote for the president isn’t enough, and you’re right. But we CAN take action, right now.

Let’s learn, then return to THIS LINK to find out who needs to hear from you!

Lean in ladies, I want to amplify your voice.

Let’s dig into some knowledge because knowledge is power, and power plus unity are what we need to make an impact.

I turned 18 about two weeks before election day, and I voted although I was disappointed in my presidential options. I remember the grey booth, and the long list of names. I remember feeling that I had done something both weighty and anti-climactic.

Most elections after that I had to mail in my vote because my husband’s military career took us far from our home state. I took my ballot to the post office, but I had my doubts, and no one gave me a sticker. I wondered if anyone heard the tree fall?

One election recently I did not vote. I felt the only way to make my voice heard was to abstain, but afterwards I felt I should have at least pencilled in a name, or maybe scrawled Mark Twain’s quote, “If voting made a difference, the government wouldn’t let us do it.” But I got lazy.

Each election year has held one thing in common. I did not know many of the representatives on the ballot or even what the structure of the government they served in was, much less how it functioned.

COVID is giving me a crash course though. I called into our local City Council Meeting to speak on an agenda item that would affect my family and community greatly. There was a woman muddling together disparate acts and trying to use those to back up an ordinance she wanted the city to adopt. She roared about being an elected official with “the plenary responsibility to govern.” Plenary means unqualified or absolute.

“But the Constitution,” the city’s legal counsel kept reminding her.

I made a comment that day, and the ordinance was voted down. I wrote an open letter to my closed church and now they are offering their members space to worship during this crazy time.

I do not know if my words changed anything, but I do know that I raised my roar respectfully and it was at least heard. Maybe healthy, positive things would have happened anyway, or maybe my voice was necessary.

Do you feel unheard right now? When your great-great-grandmothers felt that way, they marched, they made signs, they spoke out, and they won us the right to vote.

Wether you believe we are not being tough enough on COVID or you know our rights are being restricted because of a disease with a very low death rate – do you wonder if your vote can possibly make a difference?

Abraham Lincoln disagrees with Mark Twain in that he believes, “The ballot is stronger than the bullet.”

Gloria Steinem said, “Voting isn’t the most we can do. But it is the least.”

Yes. It is the least.

Who knows what the most we can do is… But more that we can do is to know who we are voting for, and how government works even down to the local level.

Because do you know who affects your life more than the president? Your wacky governor in his big house, and the Leslie Knopes.

Yes, it’s true. The federal government does not have as much jurisdiction over your life as your state government does, and whatever your state mandates has to either be enforced or not at the local level. That brings us back to our roar…

After a century of trying to make space for women’s voices…

After women’s voices only having a platform for a tiny fraction of humankind’s history…

Now amidst this year of unrest, women who fit a certain agenda are allowed to do and say whatever they want. Women who don’t fit that agenda are publicly shamed. And women who are mistaken or unwell are not given the benefit of the doubt or mental health resources. Instead they are eviscerated in front of the nation.

I don’t know about you, but I don’t want women to fall quietly back into others’ agendas. I want our own individual voices to grow. This mama bear wants to speak for her children’s futures and have it heard. I want our roar to grow less fearful as it gains knowledge.

Because John F. Kennedy said, “The ignorance of one voter impairs the security of all.”

I know the names of every plant in my neighborhood, I know the ingredients in my food. But I was shocked to hear my city council representative in her own words say that she needed to be able to exercise unchecked power over myself and my neighbors. I was shocked to find that my governor could upend our lives as soon as an emergency was declared.

I need to know the names of the people that represent me. I need to shake their hands if possible. I need to understand what happens beneath the presidency, senate, and house of representatives.

How can you roar if you don’t have the words, haven’t read the map?

Let’s go women – we are the life givers and the intuits. We are intelligent, strong, and brave. We are mama hearts and we are juggling so much. But there are women that fought for 70 years so we could begin to roar a century ago, and we are letting them down if we don’t learn and step up. There are daughters looking to our example, and we must not let them down.

That’s why today I’m starting my journey. I’m going to get educated, and I’m going to be bold enough to share with you as I do.

So here we go…

whitehouse.gov tells me that “Under the Tenth Amendment to the U.S. Constitution, all powers not granted to the federal government are reserved for the states and the people. All state governments are modeled after the federal government and consist of three branches: executive, legislative, and judicial.”

Yes I knew that technically, but did I think about it?

I knew all powers not granted to the federal government are reserved for the states and that is why it’s important to make sure federal government doesn’t encroach on states rights because different people live in different states for a reason. Whatever floats your boat right? However had I previously thought about the fact that anything that my state didn’t snatch up as its authority was designated as my right?

Our governor used one declaration of emergency to issue 46 executive orders and change 400 laws in 142 days. He wants all the rights to belong to the state, none for the people.

“In times of war, disease or other extraordinary conditions, each state authorizes its governor to declare a state of emergency. Once an emergency has been declared, executive powers expand until the emergency ends. These powers include authority normally reserved for legislatures, such as the ability to suspend existing statutes or effectively create new laws—albeit temporarily and only as needed to respond to the emergency situation.”

Thankfully there is a federal constitution to check the state executive branch’s bounds when it comes to our unalienable rights, but that takes an appeal to the Supreme Court. In the meantime who stands in the gap? We do. Our representatives do. We roar.

These are temporary orders, mandates, and guidance that ONLY apply while the state of emergency is in force? According to the Emergency Services Act: “The governor shall proclaim the termination of a state of emergency at the earliest possible date that conditions warrant. All of the powers granted the governor by this chapter … shall terminate when the state of emergency has been terminated.”

Of course our governor doesn’t want COVID to end even if our hospitals are at only 60% capacity when pre-COVID they were at 80% – because that means his powers diminish and rights must be returned to who they belong to – us, the citizens.

Then you ask, who makes real laws? That takes both parts of the state legislative branch – the house and senate – representatives that we elect. And who makes sure these laws are legit and don’t infringe on our rights according to the state constitution? The state judicial system, the state supreme court.

Then how does this trickle down to us? How do the details get enacted and enforced in our communities? Who serves or interferes with us on a daily basis?

Local government. All Leslie Knope jokes aside these people are important.

Do you know who your city council members are? Do you know how and when they are elected? Have you ever listened to a city council meeting? Have you emailed the superintendent of your school district about your child’s school being closed? Do you know where your mayor or county supervisor stands on what is happening in your city and county?

Women we have been given the right to vote and speak up on every level. So let’s do it because even though the presidential race gets lots of attention, what happens in your state and city government has more impact on your life and you have an essential voice there.

There is a lot of noise. Your voice is a few words in a great storm but it is powerful. The more of us that speak up, the more powerful we become just like the women who linked arms and stood up so their daughters could cast a vote.

You’re busy, you barely made it through this blog post while hiding in the bathroom from the kiddos. But tonight, pour yourself a glass of wine or cup of coffee and CLICK THIS LINK which will reveal each of your elected officials.

Write a few pointed words or pour your heart out. Don’t worry – you can’t say the wrong thing. Just say what you know from experience. Say what you believe. Tell them how your community is struggling. Point out what is going wrong and what is going right. Lay out what your children need, deserve, and have a right to.

We are women, hear us.

. . .

For those who are local many of our CA officials are not up for election this year. However, Dr. Melanie Burkholder is running for CA assembly and Brian Maryott is running for Congress this November. They both want our kids back in school, small businesses open, and families to have choice in education and medical treatment. So if you feel the same, then don’t just vote for them, reach out and see how you can get involved in small simple ways over the next few months.

For two years I have been fighting to walk again. I have shared this many times here, but for a quick recap – a little over two years ago I had compartment syndrome that went undiagnosed which means it wasn’t surgically treated and this caused paralysis in my left leg. That set me on a journey of learning to navigate life in a wheelchair and exploring every physical therapy and mobility option I could which led me and my medical team to search for an exoskeleton.

My last post detailed how I went through hours of painful and exhausting therapy and equipment trials until my journey culminated in the bionic exoskeleton made by Ottobock – the C-Brace. My first experience with the C-Brace was with their trial unit which was large and heavy. As Ottobock said, it was “one size fits no one” and is just designed to determine if a patient is a good candidate for improved functionality with the C-Brace.

The C-Brace works by sensing where your body is in space and unlocking the knee for the swing through phase and then providing the perfect amount of resistance and support as your weight is shifted into that leg in order to swing your other leg forward. As you can see from the video below steps with the demo brace were small, shaky and slow, but it was apparent that this was a brace that held the possibility of much greater mobility for me. The robotic frame attached to my leg got me from wheelchair to standing and at least shuffling. After a year of staring those parallel bars down I knew that making it through that gauntlet is the first step to freedom.

After that it was time to wait in uncertainty and hopeful anticipation, until the the day came for ABI Prosthetics & Orthotics to make a cast so that my C-Brace could be fabricated. There were lots of measurements and fine tuning – here are a couple snapshots of the process of casting that I know well by now.

Then there was more waiting, this time on the edge of my seat in eager anticipation, still trying to pinch myself because it felt too good to be true that I would be up and walking in a normal gait within a few weeks. I was used to anything that has to do with medical equipment or appointments taking at least twice as long as the estimate, but that was not the case with the Ottobock C-Brace and before I knew it I was back at the ABI P&O office to try on the prototype brace. During this session I wore a mock up of the final C-Brace and stood on and in front of digital sensors that created a 3-D model of me and the brace so that my orthotist could make adjustments to make sure that my standing alignment would be correct. We tried on all the shoes to make sure I would be stable in Doc Martens and Chuck Taylors, and then the prototype was sent off to Ottobock so they could make my robotic leg.

All of this was to make sure the exoskeleton fit my leg like a glove, but the real magic would be in the smart knee component mounted on the outside of the C-Brace. It would contain the same technology that the C-Leg revolutionized the world of prosthetics with. In my next post I will share what the C-Brace has enabled me to do in the first few weeks that I have had it and what my hopes are for the future. In the meantime here is another glimpse of life with the C-Brace…

add a comment
email a friend

Exoskeletons : Rigid external coverings for the body in some invertebrate animals, especially arthropods, providing both support and protection.

Before my leg was paralyzed and I was sitting in a wheelchair, I had never given these much thought outside of our homeschool lessons about lobsters and grasshoppers. While I was going to neuro rehab three days a week I was hooked up to electricity, propped up inside of a standing cage, measured, tested, poked, and stretched. One day they said during the next session they were going to put me inside a robot, an exoskeleton to be more exact. Two days later I rolled into PT to meet a human exoskeleton. My feet, legs, and hips were strapped into the exoskeleton, and the power source and motor were strapped to my back in a rigid backpack. The ekso unfolded and stood me up. With my good leg I would take a step, then shift my weight to trigger the ekso. I would hear a beep when I hit my mark correctly and then the robot would take my nonfunctional leg that it had locked into a standing position and bring it forward in a slow but perfect step, and repeat.

Physical therapists never let go of me to make sure I didn’t fall and each step was laborious. It’s hard to even say it felt good to be up walking because it didn’t feel like walking. If felt like inhabiting a robot and the experience was surreal. We would tour up and down the hospital hallways and through the lobby gathering stares from onlookers. When we finished the robot would fold me like a taco and deposit into a seated position in a chair. Then the ekso would be unstrapped, plugged into charge and I would transfer back onto my wheels. After these sessions I would lie in bed crying because of the pain.

This was my first understanding of the fact that I was now in need of an exoskeleton, and that my mobility might depend on how well this technology had and would be developed for humans. My KAFO (knee, foot and ankle orthosis), the locked leg brace that you are all familiar seeing me in is a crude type of exoskeleton, one that is not smart at all. I offers me support to put weight on my bad leg without it collapsing and protection from falling. I can swing it forward from the hip, walking like a pirate with a peg leg, and tripping over the subtlest discrepancies in the ground beneath my feet. Ambulating in my KAFO brace got me out of the wheelchair, but it was slow, painful, non intuitive and fraught with the risk of falling. When people saw me in public and cheered that “it is so good to see you walking!” I said yes, I’m tall again, because that is mainly what it felt like was accomplished by the KAFO.

An alternative to exoskeletons that I tried was functional electrical stimulation. I spent countless hours on the FES cycle with my foot strapped to a bike pedal. As it spun electrodes on each of my muscles from my left hip down were triggered in turn by electrical currents. These electrical shocks fired each muscle in the functional sequence it would if I could actually ride the bike. This prevented atrophy, increased circulation, stimulated nerves and provided some pain relief afterwards (even though the process itself was very painful) So my PT suggested I try an electric stimulation brace. This brace was simple a strap around my calf and thigh that had electrodes inside. When turned on they shocked my muscles so that my muscles would flex and mimic a normal step and hold my leg rigid under me to support my weight. This also got me off wheels, but was painful and did not offer enough function to do more than ambulate up and down a hallway. It was nowhere close to getting me back to physical and family activities.

As you can imagine two years of PT, research, trial and error was painful and exhausting. It was physically grueling and an emotional roller coaster each time I found out about something that might help, but then was quickly met with its limitations. I didn’t give up on my journey back to mobility though. I learned about the advances that are being made in exoskeleton technology to empower humans that need them, and this eventually led me to the Ottobock C-brace which is basically a really smart, lightweight exoskeleton for my leg. Here is a photo of the C-brace, and I can’t wait to share more with you in my next post about all the details of this absolutely life-changing piece of gear.

add a comment
email a friend

« Older posts