Jenny Smith

Have you seen the movie “The Greatest Showman?” It’s the fictional story of Phineas T. Barnum. However, the stars of the show — and the ones with whom I resonate — are Lettie (the bearded woman), Anne (the trapeze artist), Charles (the little person General Tom Thumb) and the other performers who are hired as “unique persons” for Barnum’s museum and show. It’s these characters’ sense of feeling like an outcast — and eventually embracing their differences — that has had me watching/listening to the movie over and over again. Because I can relate After my spinal cord injury, I hid my atrophied legs and arms. I tried not to draw attention to my quad hands. I was ashamed of my bladder and bowel dysfunction. These were my “broken parts,” as Lettie puts it. I’ve spoken to enough people with spinal cord injuries to know I’m not alone in struggling with insecurities. Lettie sings these words in “This Is Me”: I am not a stranger to the darkHide away, they say‘Cause we don’t want your broken partsI’ve learned to be ashamed of all my scarsRun away, they sayNo one’ll love you as you are Sound familiar? Slowly I began to accept my injury. Let me emphasize that accepting a situation doesn’t mean giving up hope. It means living in spite of the current circumstances. Acceptance is a start. But to live, truly live a full and abundant life is the next step. Whether it be a diagnosis, the death of a loved one or the ending of a relationship, life can leave us numb and without direction. In the song “Come Alive,” the lyrics describe this feeling as “a dead man walking.” ‘Cause you’re just a dead man walkingThinking that’s your only optionBut you can flip the switchAnd brighten up your darkest day Can we really flip a switch to brighten up our darkest days? I believe the answer is yes. Cognitive-behavioral psychology contends that if we change our thoughts and behavior, we can eventually change how we think and feel. We flip the switch by changing our thoughts and behavior. It requires action Get out of the house. Do something for someone else (even if that is just listening). Perspective is everything, especially on the darkest days. When we truly become alive, the world had better watch out. No more living in those shadowsYou and me, we know how that goes‘Cause once you see it, oh you’ll never, never be the same It’s a recurring battle After being handpicked by Barnum, the group is accustomed to being called “freaks.” But P.T. Barnum sees something special — something beautiful — in their differences. As Lettie hides from the stares of the audience, Barnum tells her, “They don’t know it yet, but they’re going to love you.” Often others can see something in us that we can’t see in ourselves. When Barnum turns the group away at a large society event, it cuts to the bone. But Lettie’s inner strength overtakes her doubts. When the sharpest words wanna cut me downI’m gonna send a flood, gonna drown them outI am brave, I am bruisedI am who I’m meant to beThis is me In my own experience, it wasn’t necessarily others’ words that cut me down; it was my own self-talk. Prior to my injury, I had always judged myself based on what I did. After my injury, I was completely dependent. My abilities had been stripped away from me. I had lost my identity. But as I met others with spinal cord injuries, I slowly learned from them. I developed courage. Just as P.T.’s band of oddities found solace in each other’s company, I learned to march to the beat of a different drum from other wheelchair users. I learned to accept myself. Look out ’cause here I comeAnd I’m marching on to the beat I drumI’m not scared to be seenI make no apologiesThis is me I learned to make no apologies for who I am. Like Lettie, I can say I am brave. I am bruised. But this is who I was meant to be. This is me. A shout of freedom This is me. It’s a proclamation of choosing to not be defined by the world’s standards. To let go of what others think. To not judge ourselves. To feel the freedom that comes with acceptance and be able to shout, “This is me.” It’s freedom. I often say that a wheelchair has taken me places I never imagined. Would I have ever worked in countries around the world if it weren’t for my injury? I doubt it. Would I still be involved in sports at my age if I wasn’t involved in wheelchair sports? Probably not. Once we accept and embrace our struggles, our lives can turn into something we never would have expected. We come alive as we never have before. I’d never go back to the first several years of my injury. The prison of shame. Those dark days. I’ve come alive. I can say, “This is me.” When the world becomes a fantasyAnd you’re more than you could ever be‘Cause you’re dreaming with your eyes wide openAnd we know we can’t go back againTo the world that we were living in‘Cause we’re dreaming with our eyes wide openSo, come alive!

The Christopher & Dana Reeve Foundation is currently undertaking an Instagram campaign to combat the stigmas and misperceptions of what it means to live with a spinal cord injury and paralysis. I recently shared my story at their request. This is what I posted. My desire is to educate others about the ability to live life to the fullest after a spinal cord injury. I want the able-bodied community to look past the wheelchair and see the potential we have to offer. See What? A few days after I’d posted for the campaign, I was reading on my patio. It was a beautiful 72 degree evening, but I got chilled. So I came indoors, closed my E-Wand blinds and grabbed a hat and scarf. As I took out the warm neck wrap from the microwave and placed it around my neck, I laughed and thought to myself, “What would people think if they could see me?” Understand Me I had just shared those very words. See me. But to what end? Yes, I want you to see all of the positive and encouraging qualities about who I am and what I’ve done. But I also want you to understand – really see – the impact of paralysis. A spinal cord injury is so much more than the inability to use my legs and hands. I don’t share this to receive pity, and I definitely don’t want to be called an “inspiration.” But I’m wondering if the world needs to see what goes on when no one is looking. Is what you don’t see skewing your understanding of SCI? What do you see? What did you see on Saturday when I was splashing myself with water from the fountain in downtown Louisville? Did you know the heat had actually spiked my internal temperature to 102 degrees? Did you see that I can’t sweat due to my SCI? You couldn’t see me sitting with a hat and scarf and a hot cup of tea after sitting out on my patio on that nice evening. But for the same reason I overheated, I get cold easily. Do you see someone who is simply “delicate?” Or a body that can’t self-regulate its temperature since the autonomic nervous system is broken? What do you see as I come into work a couple minutes late? Do you see a person who actually gets up earlier than you? Do you see the extra time it takes to shower and get dressed and do personal care? Do you understand that to some extent my life runs on someone else’s schedule? Do you see the added responsibilities I have? The extra hours each month it takes to follow up with the insurance company and billing companies to correct their errors? Did you see how long I waited at the grocery to ask you to reach the item on the top shelf? Do you see the extra expense of living life with a disability? The need to work two jobs to pay for personal care? Have you seen the long list of medical supplies the insurance company considers out of pocket? Where Is the Balance? As much I want you to look past my wheelchair and see me and not my spinal cord injury, I need you to see the bits and pieces of life that make me who I am. It’s not all fun Facebook posts or Instagram perfect pictures. So where do I find the balance? I want people with new spinal cord injuries to have hope that life can be good. Great. But I don’t want to sugarcoat things either. Life can be hard. And that’s just as real. In my writing I hope you see a balanced perspective. I want you to see me maintaining a career and traveling overseas. I’ve shared the frustration of bladder and bowel issues that led me to a drastic surgery. I need you to learn about the not-so-small parts of life like transferring in and out of bed. Managing spasticity. I hope you can see the joy of playing rugby. The pleasure of rowing. The ability to cook. I want you to appreciate the importance of community and family support. To understand the difficulty of hiring a personal care attendant. The excitement in learning how to put on boots. To comprehend the importance of maintaining my health. To grasp the financial struggles. I want to be willing to share the good, the bad and the ugly – with the intention of helping you understand how spinal cord injuries affect every aspect of life. But I don’t want that to be the focus of who I am. It is part of me, but not all of me. See me. All of me. #ReeveSeeUs

Some items make life easier. Others make it more enjoyable. As a quadriplegic with limited use of my hands, I thought I’d share some of my favorite quad-friendly modifications and adaptations in my living room. Problem : Turning on lamps with those pesky little turn knobs Solution : Remote switch and touch lighting This little wireless rocker switch is invaluable. The receiving end plugs into the wall and your floor lamp or decorative lighting plugs into it. I actually have three small lamps plugged into one with a three-outlet adapter. All you have to do is push the switch. This gadget is also great for traveling. If a hotel room doesn’t have a light switch near the bed, just plug this into the wall and keep the switch in or near the bed to control the lamp. A touch light switch is great for a light with a metal base. This converts any lamp with metal into a touch dimmer light. Simply tap the lamp and the light turns on. Problem : Safely lighting and blowing out candles. Solution : Flameless candles. Have you ever seen a quad try to blow out a candle? My lack of intercostal muscles makes it a humorous sight. I have never even dared tried lighting a candle out of fear of burning myself or the house down. But I love the “mood” of candles, especially during winter. They make my house feel warm and cozy. There are many different brands of flameless candles, but I believe you get what you pay for. I love the Luminara brand. I have one 3.5 x 7 inch pillar candle and two 12 inch tapered candles. All three are controlled by a single remote. These were all Christmas gifts over the past several years and I enjoy them often. If you’re looking for a less expensive option, I recently purchased two 3 x 4 candles to go inside two sconces in my bedroom. The Luminara brand look more realistic, but these work great since they are inside crystal. Problem : Vacuuming Solution : Roomba A wheelchair can make messes. (Yes, I’m blaming the chair, not myself.) Crumbs always seem to be everywhere. A Roomba vacuum cleaner is an easy way to vacuum up messes. You can set it on a timer or use the remote to spot clean. I have an older model that does the job well, although the newer versions have a lot more bells and whistles. Problem : Controlling the thermostat when I’m in bed Solution : “Smart” Thermostat I’ve had a programmable Honeywell thermostat for about 10 years. I love it – not only for its energy-saving qualities – but to have the heat turn on before I get up on a chilly morning. I recently upgraded to the Honeywell Wi-Fi 7-Day Programmable Thermostat that can be programmed for each day of the week – and controlled remotely by an app on my phone or by Amazon Alexa Dot. Adjusting the thermostat from the comfort of my bed? Yes, please! Problem : Door Threshold to Patio Solution : Threshold Ramp Sometimes getting over a small door sill feels like pushing up a mountain. When I bought my condo, the builder graciously installed a door sill ramp leading out to the patio. This makes it an easy and smooth roll out to my patio. Getting back in the door can still take some work, so on this summer’s home improvement list is getting a threshold ramp like this one to help me easily get back inside the house. Have you upgraded to a “smart” Wi-Fi system to control your lights, etc.? If so, what are you using?

It can be so hard to see a friend face depression. What do I say? What if I make it worse? Many don’t know how to start supporting their friend and sometimes, good intentions end up pushing them further away. When I was in the depths of my depression, I experienced a wide variety of ways people tried to help. While it may be easy to focus on what not to do, here are things that were life-saving for me: Listen. You may have experienced depression yourself or had another close friend go through a similar experience, but depression is different for every individual. Don’t assume you know how they are feeling. Actively listen. Ask them what their experience has been like. Ask more questions if they’re open. This may seem intrusive, but I felt loved and cared for when friends showed genuine interest in the pain I was experiencing. Be patient. Depression often makes you feel irritable and tempted to isolate. A friend with depression may constantly decline your offers to hang out. Still reach out to them, though. Try to do something that would be easy and comfortable for them. I was extremely grateful when a friend would occasionally come over and do homework while I just watched Netflix. A big reason I didn’t want to spend time with others was because I didn’t want to bring them down with my negativity. Your presence shows them how much you value them, even if they’re not themselves. Be proactive and reach out to them regularly, even if they don’t open up. One of the most life-saving things for me was when several friends would text me every one or two weeks, and sometimes more when I was really sick. They would usually just ask how I was doing. Even the short conversation meant so much to me. You may think, “Oh, I’ve offered for them to text/call me anytime.” But depression will cloud this message. Depression may constantly tell them that they’re worthless and that they’re a burden. Keep on reaching out. When they do reach out, realize the incredible amount of strength it took for for them to do so. Be non-judgmental and don’t react in shock, disgust or blame. Depression is an illness. Someone with depression often cannot help what they’re going through. Your friend may get stuck in dark thought patterns, intrusive thoughts, self-harm or suicidal thoughts. If they’re ready to open up about their struggles, realize how difficult it is for them to share and to go through it. I felt so relieved when I was able to trust friends that reacted calmly and lovingly to my issues. I would usually test the waters and share more based on their first reactions. I needed to share and receive support. Be direct and don’t be afraid to ask hard questions. You may fear asking your friend with depression about suicide and self-harm because you don’t want to plant the idea in their head. But if they’re wrestling with these thoughts already, it’s usually a big relief to be able to share with someone and not have to keep it a secret. Also, be direct when asking. You don’t have to be mean about it. Try saying something like, “I’ve noticed you’ve been acting a little off recently. Some people think about self-harm or suicide when they’re upset. I love you and want you to be safe.” If they tell you that they’re dealing with suicidal thoughts, gauge the seriousness of the situation and ask them if they have a safety plan. If you don’t feel comfortable asking more about the issues, suggest that they receive more help. Even sharing the national suicide hotline/crisis text line with them can help immensely. Supporting a friend with depression can be overwhelming at times. But it doesn’t have to be. Stick to these basics. Listen to them, remind them of their worth and tell them you love them.

After sustaining a spinal cord injury at age 16, I worked hard to become as independent as possible. I work full-time and stay active in my community and in sports. As a C6-7 quadriplegic, I still need assistance several mornings a week with personal care. But my hard work only got me kicked off a state program that helped me pay for my personal care. Why? Because I make “too much” money. So I applied for a state grant that is not income-based to help cover these expenses. I was denied. It seems I wasn’t disabled enough. Life with a disability isn’t cheap. My private health insurance costs over $450 a month with another $450 budgeted for out-of-pocket expenses. I plan for the future and save for a $30,000 vehicle (the state requires a new vehicle in order to assist with modifications) and put away money for retirement. For an able-bodied individual, this is a balanced budget. But add into the mix over $500 a month for the personal care that helps me get to work, stay healthy, and be a productive citizen. The budget now runs in the red. I am simply physically incapable of showering and doing my bowel program without assistance. Believe me, I would do anything to be independent in these two areas of life. Think of it in these terms: Could you pay $30 every time you wanted – no, needed – to take a shower or poop? So now I’m working a second job. Yes, I could stop putting away money for retirement and a new vehicle to cover personal care. But without a vehicle in 10 years, I can’t work or live independently. If I can’t work, I’ll be on SSDI and Medicare. Instead of paying taxes, I will be consuming them. What does this teach people? It reinforces the fact that working often penalizes persons with disabilities. I am in favor of state and federal governments saving money and being fiscally conservative. But placing unrealistic income limits on those of us with out-of-the-norm healthcare expenses simply doesn’t save the government money. When people with disabilities do not work because they live in fear of losing the services they receive, it costs state and federal governments money. Statistics show that only one-third of people with spinal cord injuries are working 20 years after their injury. This figure represents a significant percentage of our population with valuable skills and experience are not being tapped into. I believe our country needs to rethink the value of people with disabilities in the workforce. Not only do we have a lot to offer, but it’s a win-win situation for all involved: individuals, employers, the government, as well as our communities. We want to hear your story. Become a Mighty contributor here . Image provided by contributor.