9 Lessons to Acknowledge 9 Years of Hereditary Spastic Paraplegia

Last week, 9 years ago, I went from thinking I was an able-bodied kid who was just very unathletic to suddenly being hospitalized. After leaving the hospital, I would go on to get the results of my genetic test to find out I am missing 3/4 of the SPG4 gene that produces the SPAST protein, which keeps your leg muscles elastic. I have learned a lot in these last 9 years about navigating the world with a physical disability and forming my own identity. This week, I want to share the top 9 lessons I have learned to honor these last 9 years.

1. Find a good medical team that you trust.

   I personally use a blend of western medicine, supplements, and what I consider hippy treatments. Whatever you believe in, find a medical team that you trust and that listens to your boundaries and needs as a disabled person. I have had to change doctors so many times because my symptoms were not believed, only to end up being right. I have spent years firing doctors and searching for a well-rounded support team. My current regimen includes a chiropractor, physical therapist, mental health therapist, and primary care physician. I add in a massage therapist and other pain management tools as needed.

2. Let other people help you.

   I have had to ask friends for help more times than I could count. In high school, I needed help pushing my manual wheelchair because I would get stuck in ditches at school and couldn't get out. I still need help with driving to events and walking around. I don't think I will ever not need accommodations, even when I am able to fully walk without mobility aids. I used to feel really bad about needing help, but over time, I stopped feeling so bad. My friends love me and want to help me, just like I want to help them in other ways. If you are newly disabled, don't be afraid to ask for help because chances are others want to help you. In my case, my friends were usually very relieved when I would actually sit down instead of wobbling about as a falling hazard because I was feeling too stubborn to rest.

3. Find a community

   This is pretty recent, but find a community of other disabled people. In high school, I did not have a community of disabled people, and I would talk to my friends about what was going on with me. While my friends were supportive, it is different than talking to people who can relate on some level. Having a community of disabled people helps me feel less alone in having disability symptoms, and I feel less guilt in asking for help because I know there is a level of shared experiences. For a long time, I thought I could only find community in people who had the same condition. However, I have found community in friends with different conditions with similar experiences navigating these conditions. I have also been enjoying being in professional disability advocacy and research spaces, where I can combine my advocacy skills and desire to learn.

4. Less is more- listen to your body

   I have had multiple times where I would overdo activities and then need multiple rest days to recover. I still struggle with this, but it is okay to rest. Your body will thank you. I still have a bad knee from falling in college because I didn't want to wait to put laundry away. The laundry can wait; your knees will thank you. Your friends also will most likely be willing to plan activities with you that allow for more rest. I have had many hangouts where we just watch a movie at home so we can rest. It's a nice way to be social without overdoing it. When choosing activities to do in a day, I have had better luck when I listen to my body instead of aggressively checking tasks off on a list. Sometimes less is more.

5. Don't forget about mental health

   I have attended a lot of therapy to talk about my physical disability diagnosis. I still attend therapy to talk about it, because mental health and physical health are connected for me. I had to learn how to accept my body as it is, and find a way to work with it instead of against it. I am not perfect with that relationship, but it is something I actively work on. Therapy is a great place to talk about the emotions of navigating having a disability, and there are many accessible options, including therapy on Zoom and some text-based options.

6. Advocacy is an important skill I encourage everyone to enhance.

   I unfortunately have faced a decent amount of discrimination due to my physical disability in the workplace and at school. My advocacy skills have helped me be able to protect myself and stand up for my rights. I am very good at stating what my accommodations are and the things I can and cannot do. However, advocacy is a skill that takes time to grow and develop. For every time I sound eloquent and confident, there are 20 times I intimidated a teacher by sounding too intense or snapped at a classmate who didn't deserve it. I continue to grow my advocacy skills through this blog, professional research, and speaking experiences, and by going through the accommodation-seeking process at school.

7. Talk about disability- don't hide your disability

   This one might sound weird, but I have found that talking about disability makes disability less of a strange subject. I call people out for illegally parking in disability parking spaces, and ask people not to use the R word or the H word around me. By talking about disability, I can create a safer space for myself where I don't need to try to hide my disability. It makes it easier to ask for accommodations because people already know I will need them. An added benefit of doing this is it has made it easier for me to find a disability community because people have come up to talk to me about their own experiences with disability. Talking about disability is a great way to start working on advocacy skills and finding a disability community while also helping to make disability less of a stigmatized identity.

8. Have patience

   I honestly hate that I have to say this, and I might even be slightly hypocritical for this advice, but it's true. Many systems are not built for us. I have to do more work to get disability accommodations at school, I have to worry about possible disability discrimination in classes and job opportunities, and I have to be prepared to explain the complexities of having an invisible physical disability to those who don't understand. It can be taxing. However, having patience keeps me sane and helps me reframe some of my experiences as a teaching moment. If you have a new disability diagnosis, note that you will need patience to navigate some of the systemic systems in place to get accommodations. However, people generally mean well and want to help. Plus, I hear people say that having patience for others is good. I'm still not known for my patience, but I am trying to improve because I need it.

9. You will keep learning things

   I will always be disabled; that isn't going away. I know I will keep learning about myself and the disability community at large. I have already had some of my opinions about disability change as I have learned more information. That process won't stop. Disability as an identity changes and molds over time, and this blog will adapt as I move through different stages of life.

I have learned a lot over 9 years of having hereditary spastic paraplegia. I am grateful for the opportunities I have gotten because of my disabilities, and look forward to continuing to grow my advocacy skills. Thank you for reading about 9 lessons I have learned about having a physical disability in honor of 9 years of my hereditary spastic paraplegia diagnosis. If you have any questions or comments, please comment on the blog, reach out at @Anniekrollblog on Instagram or Facebook, or email me at Anniekrollblog@gmail.com. I hope to see you next week!