Imagine going to buy your first car, giving it a name, keeping it clean, getting used to your independence and then learning you have a chronic illness. Much like getting an initial diagnosis and struggling with denial and acceptance, coming to the conclusion that I would have to sell my car because of my chronic illness did not go over well with the independent woman trait of my personality.
What started as needing more time to get in and out of the car eventually evolved into not be able to safely drive myself around without having to reposition my body, legs and even my foot on the gas peddle without additional help. This month marks the one year anniversary of giving up my car – that’s right I made the decision to stop driving in light of the symptoms of my chronic illness. It wasn’t easy and I’m just now – a year later going through all of the contents of a bag labeled “car,” with a few tears in my eyes, but I know it was for the best.
Since then, I haven’t really missed driving myself around. I have found public transportation for those with disabilities in my local area and have a team of family, friends and health aids who fill in the gaps of my transportation needs. As I reflect on the last year, I want to share with you three important reasons that really helped me to understand and accept that it was time for me to make a change; and it may be time for you to make a change too.
- Driving became a difficult task: As I’ve discussed in other posts, living with Muscular Dystrophy can create physical challenges for ordinary, day-to-day tasks that many able-bodied people my age take for granted. I noticed that getting in and out of the car became troublesome. At red lights, I eventually needed to physically lift my leg from the break to the gas peddle. These were just a few of the signs that confirmed what I already knew to be true: driving myself wasn’t safe anymore for me or others.
- Family and friends were concerned: As I took notice of the physical challenges of driving, my family and friends began to notice too. My mom in particular, started to suggest that it may be time to transition to other forms of transportation. I wasn’t open initially, but over time I began to see that she was right. It took some time, but my family continued to softly nudge me in the right direction. Sometimes the hardest truths are shared with us by the ones we love. Don’t ignore their concern.
- I was holding on because of fear: I realized that for me, having a car felt like my last leg of independence. I felt like giving up my car was like handing over my mobility; but once I made the transition to a wheelchair, I now experience more freedom than I did before. It may not sound as sexy, but I promise that if you give the right wheelchair a chance, you’ll see for yourself how this new set of wheels can be the difference between barely moving throughout the day to getting where you need to go when you want to be there.
- There were better options: While I was in transition, I had the opportunity to test out a few of the many new, innovative approaches to getting around with limited physical mobility. One of the many resources I found included Mobility Works, a company dedicated to creating convenient options for folks with any type of disability. Mobility Works is just one of many resources out there who create custom vehicles and motorized personal transportation options to support the daily challenges many with differing levels of mobility face. No matter what brand you choose, know that there are options! I considered the custom made cars, but realized that I just wasn’t interested in relearning the driving process that was required with the disability-friendly vehicles, but that may not be the case for you. Whatever you choose, know that you have options.
When I opened that bag of items left from my car, I was a little sad, and I can’t say that I don’t think about my car whenever I see a RAV4 pullup beside me in the parking lot. It still stings, but I know I made the right choice. Life is all about learning how to make the decisions that are right for us – even when they are painful or may take time to heal from. Regardless of where you are in your journey, don’t let change slow you down. Your next breakthrough is right behind your biggest obstacle.
I don’t know where I want to eat. There are too many choices.
Why is my high-speed internet so slow?
There’s absolutely nothing (I want) to eat in this house.
All of us are guilty of making statements similar to the ones above. As Americans, we have A LOT to be thankful for compared to other countries faced with hunger, toxic water supplies and a lack of formalized structure or systems of government assistance or aid. Yet, we still have what has become affectionately known as, “first world problems,” – which aren’t really problems, more like annoyances with the imperfections of the luxuries we so carelessly enjoy.
You may be thinking: I thought this post is about able-bodied people or some aspect of living with a chronic illness or disability? You’re right. That’s exactly what this post is about. It’s about the many ways I wish able-bodied people would realize their “first-world problems,” are not really problems. It’s not meant to guilt or blame able-bodied people, but just to remind them to take advantage of the gifts of full mobility and being able to sit up in their beds. It’s about not taking anything – especially, your ability to move freely for the most part on your own for granted.
Here are three things able-bodied people should never take for granted:
- Taking a shower: Have you ever fallen in the shower? Many of you may actually say yes. Either you missed the rug, the rug was slippery or you were too busy trying to finish that text before you fully emerged in the stream of water from the showerhead. But have you ever fallen and not been able to get up? That happened to me this year. I was following my usual routine of trying to be as careful as possible and somehow I slipped. Falling has become an unavoidable part of my life, and I usually just get back up and keep moving, but this time it was different. There wasn’t anything for me to pull myself up on and on the way down I hit my head along with bruising other parts of my body. Thankfully, I use a lifeline device and was able to call for emergency assistance. Help did finally come and though I was naked and felt a little vulnerable, I was thankful for technology that can be the difference between laying somewhere for hours or waiting 30 minutes for help to come. All that to say, ENJOY YOUR SHOWERS. Be mindful that even taking a bath can be a luxury for someone in my shoes or in a similar position.
- Turning off the lights: Many of us hate when we get in the bed, have gotten halfway through a good book, started to doze off and remember we have to turn off the light. What may seem like a simple task to anyone without a chronic illness or disability can now feel like a nightmare. Can I make it to the light without falling? What if I fall on the way back…in the dark? Should I take my phone just in case? Is it even worth it? All of these considerations and more would run through my mind before upgrading my living space to run on Alexa (thank God!), but that doesn’t work in hotels, over friend’s houses or vacations. It may seem simple, but being able to turn off the lights is a luxury that all of us don’t easily have.
- Getting a cold: I know this may not seem like something able-bodied folks shouldn’t take for granted, but go with me for a moment. Getting a cold before I had my diagnosis was a lot different than it is now living with Muscular Dystrophy. When I was sick, I would tough it out, grab an over-the-counter cold medicine, maybe sleep a little longer and wait for it to pass. It didn’t necessarily interrupt my life. Now – it’s completely different. Getting a cold can mean war for my body. Finding the right medicine that doesn’t counteract my current medications, lower my immune system or make me lethargic is a real job for me. When my body aches, I am not just sore. It can be writhing pain that limits me to either sitting or laying in bed all day – and that is NOT me. I’m an independent woman, with a business and plans to take over the world. I don’t have time to bedridden with a head cold, but sometimes that can happen. Your normal seasonal cold can feel like the flu for me and others with chronic illnesses. Keep that in mind next time you feel the sniffles. Trust me, it could be a lot worse.
If I could leave one thought with all of the brave able-bodied folks who read this, I want to remind you to be grateful. Focus on the good, encourage others who may not be in your shoes, and live your life to the fullest. Before my diagnosis, there were so many things I took for granted, but now I see that everything truly is a gift and a blessing from above.
It is only with gratitude that life becomes rich.”
— Deitrich Bonheiffer
Living with a disability has its challenges, but there are also moments when the journey that comes with a diagnosis can turn into something empowering, and I want to give a special shoutout to Ann Wolfe for making this magic moment happen!
This past month, I had the privilege of joining a panel of five participants to discuss the complexities of patient advocacy of the disability and chronic illness community at the Rare Disease Innovation and Partnering Summit in Boston.
The summit included panel discussions, networking opportunities, demonstrations and treatment resource stations and so much more. People from all over the country and world were present to get more information and meet other people who suffer from or support someone who suffers from a rare disease.
I was humbled to be asked a second time to participate in this conference and couldn’t wait to share my perspective on the challenges myself and many of those with Limb-Girdle Muscular Dystrophy face on a daily basis. I’ve shared in my previous posts on the misconceptions of living with a disability as well as the many other topics like choosing the right doctor and traveling comfortably, that everyday life isn’t as simple as it used to be; and being able to help other people understand what their loved ones go through or feel like someone understands their pain, was the highlight of my time at the conference.
Along with my panel and other activities, summit attendees also had a chance to participate in a question and answer session with doctors on topics like treatment options, genetic testing and other areas of patient improvement and care.
Aside from the awesome opportunity to share my story, I really enjoyed meeting new people and making connections from summit attendees and vendors throughout the day. If you haven’t thought about or explored the possibility of attending a summit or conference related to the disability, chronic illness you or a loved one might be experiencing, I really encourage you to give it a try! Before my diagnosis, I didn’t even realize events like this existed, but now that I do, I’m going to commit to showing up and getting the information and connections I need to stay up to date on what’s going on the rare disease community beyond my local community.
If you’re interested in learning more about the Rare Disease Summit, visit their site here and get plugged into an amazing resource and event.
The alarm clock goes off. My eyes are open, and I narrow my lids to a squint as the sun skids across my bed. It’s time to get up. It’s time to start my morning routine of figuring out how my body will function today. If I sit up will I be able to move the rest of my body without any pain? How should I pace myself as I prepare to move my feet from the bed to the floor to avoid falling? How will I turn on the bathroom light?
These are all questions that I encounter as I start my day living with a chronic illness. When I tell my story, I am making my best effort to invite others into the world of Muscular Dystrophy in hopes of helping them understand that the life I and so many others live is not as simple, easy to explain or mundane as some portrayals of rare diseases on tv, in print and other forms of media may have you believe.
We feel like you feel. We make mistakes. We have our good days and some really bad days, but most of all, we are human just like you.
Living with a disability has many challenges, but one of the hardest ones to overcome has been the misconceptions that our families, friends and the world around us continues to make; especially regarding what we can or cannot do.
Based on my many interactions with both individuals living with a chronic illness and those who don’t, I want to share a few perspectives that limit the ability of your loved ones, friends or co-workers to be anything beyond “disabled.”
5 Misconceptions about people with disabilities:
- We are lazy or unmotivated: I once had a family member infer that I was lazy because I used Alexa to turn the lights in the room on or off instead of having to get up again once I made it into my bed. I was taken back by the insensitivity of the statement but knew that it came from a place of misinformation. The great thing about technology is the ability to decrease the amount of energy, possible injury and sometimes bodily pain that can be involved in something as simple as turning off a light. Before making a judgment, take the time to listen and understand why someone may choose want may seem like comfort. Sometimes for people like me with disabilities, convenience can be the difference between a day full of falls or rest.
- People with disabilities don’t date: or enjoy a social life Intimacy is a human trait. Everyone wants to feel wanted, go after their crush and make meaningful connections. Dating with a disability can be a challenge as you navigate the wheelchair fetishes from genuine interests, but it does happen and yes, we too hope, prepare for and seek romantic relationships. In the voice of my favorite female performer, ‘Yonce, “We like to partayyy!” Having a disability doesn’t mean that you stay in all the time or don’t enjoy being around people. For me, having a functional social life just means that I need to check the venue before I go to make sure the space is handicap-friendly and has the right set-up for me to feel comfortable. Does that mean that there will occasionally be times when I am too tired to go out, or not convinced the venue will be conducive to my scooter? Yes, but who doesn’t get tired or change their mind because the environment doesn’t have the right vibe? Do me a favor: Make sure to invite your friends or family with disabilities out every once in a while. Don’t decline for them by never asking. Include us in your plans and let us make our own decisions.
- That you’re not a quality//potential employee: Disability should never be a reason to treat someone differently, including their quality of work. I’ve found that over the years, some employers don’t know how to handle having an employee with a disability. Instead of working with through what alternative methods for achieving the same quality and amount of work as another employee, some employers rather not deal with it. My advice if you are an employee or an employer is this: have a real, honest conversation. Not being offered an opportunity to be accommodated by the employer is one of the red flags that you may not be in the right place or that an organization may not be as disability friendly as advertised. If we can order standing desks for employees based on preference, allowing an employee to avoid tasks that involve heavy lifting or moving to a first-floor office shouldn’t be that difficult. Start the conversation.
- People with disabilities don’t like answering being asked questions: I know this can be a tricky thing to do because truthfully, some men and women are not yet in the space to discuss their condition freely – especially with strangers, but I want to challenge you to start building a familiarity with the people around you who may have a disability and get to a point where you can ask that impending question of, “what type of condition do you have?” Again, I can’t promise that everyone will be ready to speak, but a lot of us would rather you ask than assume. I consider telling my story a gift now so if someone starts asking me questions, they are in for a whole journey! Don’t let assumptions or fear take over. Ask questions, show people you care and start to educate yourself by hearing first-hand what someone is dealing with and going through on a daily basis. You’ll be glad you did.
- That we don’t require the same amount of care or attention as our counterparts: Some doctors are not as thorough or don’t know how to handle the conditions folks with chronic illnesses have. I have heard horror stories of medical professionals who have a very negative way of dealing with their patients, or who work without a sense of empathy or compassion. I have encountered some medical professionals who make you feel at home in their office and others who make you feel like a number. Whether it’s a doctor or a neighbor, people living with disabilities deserve respect, care and the same quality of services and treatments as our disability-free counterparts. I know it can be difficult to practice empathy for something you’ve never experienced and don’t fully understand, but you do know what it’s like to have a bad day, be in pain or to be misunderstood. Focus on those feelings and let that be the place you draw your empathy and compassion from. Think about how you want to be treated and treat everyone with that same level of respect.
I hope you feel more enlightened and empowered to interact and begin to understand what it’s like to live with a disability or chronic illness. It’s people like you, who take the time to learn and understand others that make the world go-round. Do me a favor, share this with a relative, co-worker, significant other, or friend and let’s undo each of these and the many misconceptions about living with disabilities one-by-one.