By Chris Coates, HODA Founder and Board President
I have been gainfully employed since I was about 10 years old. My stepsister and I created a babysitting team together. We watched the neighbor kids for $2.00 per hour. I had a regular job starting at age 15 and a half. Now, at age 46, I find myself on Short Term Disability, with high hopes of not having to roll into Long Term Disability on April 11, 2023. There is a popular myth that people on disability are lazy and only want handouts. Reflecting on that, while hurtful and frustrating, is important. It’s important to break these stereotypes when we can. And in this case, we certainly can and will!
I have been using this as a time of reflection and am now here to tell you that this narrative is false and was created only to divide and cause prejudice against people who need help. We have all worked with people who look down on people that are on disability, and call us ‘lucky’, or ‘fakers’, or ‘lazy’, haven’t we? I would love to be a part of the group that smashes that stereotype, once and for all.
Earlier this week, I went to my neurologist for my disability check in. Basically, the doctor asks about how rehab is going (mind you, my case is a little different, as no one really knows what to do with HOD), if there are any new symptoms, how the known symptoms are going, and talk about returning to gainful employment. I must say, there is a deep inventory into symptoms and symptom management in those appointments. There is a deep dive into all things HOD related while the doctor intently asks questions and listens to each answer for signs that I may need more time or to go back to work.
The reflection in those appointments runs deep and it is heavy. There is no “The doctor will do what you tell him to do”. You can’t fake your way through this process. The doctor has a responsibility to the patient AND to the other stakeholders including the employers, and the insurance companies who pay out the claims. Having an inside view of the process, I now understand that it has nothing to do with laziness or just wanting an extended vacation. No, my dear reader…this has been the opposite of vacation.
Every morning, I wake up and argue with my muscles and bones. I kept up my end of the bargain. I slept all night to restore and regenerate my energy. My bones and muscles feel like I have been training for the Olympics, even though my system is now accustomed to having muscle relaxers on board 24/7 for months. The breakthrough pain is something that just must be tolerated.
Rehab takes work
Once I successfully get out of bed, rehab starts. I first take the dogs for a walk. To a normal person, this is just a chore. For me, it is a challenge to my balance, coordination, and dizziness. There are many near falls in this process. However, every near miss is a victory.
After the dog walk, I stretch out and start a solo three-to-four-mile walk. While walking, I make my head look up, and down, and side-to-side. Again, this would seem ridiculous to a ‘normal’ person. I do the walk for several rehab reasons:
- Walking daily has been proven to reduce dementia risk.
- Movement like walking helps keep my vestibular system working, thus increasing brain health.
- Walking on different surfaces helps with brain plasticity.
- Looking all around, although it feels like I am always coming off a merry-go-round, challenges the vestibular system and helps me to desensitize myself to the sick feeling in my stomach all the time.
- The regular movement helps my muscles, bones, and joints to stay in the game with me. “Use it or Lose it” comes to mind.
- Fresh air is good for the soul.
- Physical exercise helps my entire system, not just my brain.
Rehab leads to more reflection
I’m usually out for an hour on my walk. I don’t compete or hold myself to a certain pace. I like to keep my heart rate at 110-120 BPM to make sure that my lungs are working too. This is the only body that I get to have, and it’s got to carry me through this all the way to the end. The amount of time and focus required for some of those miles leaves little room for personal reflection but it’s always there, lurking beneath the surface. How is my pace? Am I better than before? Is my balance is little better today? Always reflecting. Not comparing, just reflecting.
Once I return home, I make myself breakfast. How is this rehab? I must use my brain to gather up what I need. Not only that, but I have to actually prepare the meal. that means telling myself and following multi-step instructions. It’s not for the faint of heart, I’ll tell you that. And it is absolutely required to make sure I get some good fuel to keep my energy up all day. After that, it is on to more neurological challenges. I use the Brain HQ app to work out my brain. I will often work on HODA projects, answer emails, talk with friends, or write pieces for Megan to review and publish.
I’m devoting time to reading and researching and learning about anything that might possibly help the HOD community (and me!). I take meetings with other groups, I seek out support for friends who reach out and need help making connections, I do as much as I possibly can before 3pm. You see, in my current state, I have enough energy to function from 7am to 3pm, and lately, I am only making it until 2pm. Seven to eight hours a day is all I get, and sometimes, that is significantly less.
Where does all this self reflection lead us?
The thought behind this piece is reflection. Meeting with my neurologist after 12 weeks of disability to assess is also a time of course correction. This journey has shown me that self-reflection and course correction are not negotiable. I have also learned that many folks do not possess the ability or desire for self-reflection. I have come to accept that, although it is quite astonishing to me. I’m glad that I no longer feel the need to hold a mirror up to anyone and show them all the ways that they fall short of my beliefs and ideals. I can, however, celebrate the ways in which I have grown as a person.
I have also come to see that I have been in a battle with myself for as long as I can remember. In reality, have been fighting my entire working life to prove to whomever is in authority over me that I am a valuable person to have on their side, that I am worth more than the wage they pay me, that I am under-utilized, and that I am a champion. What is ironic is that now that I have an incurable rare degenerative brain disease, those people finally believe all the things that I was forever trying to prove. I can’t tell you how many “Are you better now? You are going to beat this!” messages that I get. There is no beating this. There is only beating it back through constant work.
I wake up and beat it back until I go to bed. Every. Damn. Day. I choose to fight this every day and go to sleep with restless legs and pain every night. I used to feel so sad that this all happened to me. Now, I only feel sad for the person I was before all of this. The ‘Before’ me never took the seat at the table that I deserved to have. ‘Before’ me only wanted everyone to recognize that I was intelligent, capable, and worth investing in. ‘Before’ me would not accept the ‘After’ me, because I will take up all the space, and speak as loudly as I want to, and take the seat at the head of the table. ‘After’ me is the person that ‘Before’ me always knew I could be.
I reject the idea that I need to prove myself to anyone. I reject the narrative that disability equals free loader. Furthermore, I reject the lack of love and acceptance. I decline to have my worth defined by my job anymore. I am a damn fine human being, and I will change the world. And I will hold you on my shoulders until you begin your own reflection and you see the same in yourself.
Do you have a personal story (battle or triumph) you want to share with the HOD community? Reach out to us at contactus@hodassoc.org
Leave a Reply