10 Lessons for 10 Years of Hereditary Spastic Paraplegia (HSP)

This week marks 10 years of having hereditary spastic paraplegia (HSP). My life has drastically changed since 2016, and I have learned a lot through navigating the world with a physical disability. This week, I want to keep the tradition alive and share 10 lessons I have learned since being diagnosed with HSP.

1: Health Doesn't Wait

I have had so many times when I thought: I'm not feeling well, but I can't deal with it until I finish this project, write this blog, send this email, text this person, or do this homework assignment. Most of the time, I do a bad job at whatever task I am doing because I am in pain or am pushing off a health-related task. I am not perfect at this, especially when it comes to school, but I am trying to make it a habit that my health needs to come first because if I don't feel well, how can I set myself up well for whatever comes my way?

2: Choose Joy

I have been making choose joy my motto lately. Running late? Still dance in the car. Stressed about school or work? Still find time for a walk to be near nature. Feeling sad? Call a friend who really is there for you. It is really easy for me to let stress consume me, but that really impacts my health. Find time to laugh at life; it's made it easier for me to feel confident in myself and take things less personally.

3: Be Mindful Of Your Community

Last year, I spent a lot of time focusing on building community. This year, my lesson is being mindful of who is in my community. How do I feel when I leave a hangout? Can I trust this person? Does this person show up for me in ways that are valuable for me? By being mindful of who is in my community, I can put effort into attracting people into my life and focusing on those in my life that will uplift me, help me reduce stress instead of adding to it, and have a positive impact on my health.

4: Acceptance Isn't Worth Bad Health

For years, I avoided doing stretches, working out, eating healthy, and taking time for hobbies because I was afraid of being abandoned. I ended up getting dumped and losing friends anyway, and then I had bad health. Now I am putting more energy into my health and have the benefit of attracting people into my life who also care about their health. I was talking to someone from one of my workout classes about wanting to try a health food cafe, and they offered to go with me! Now I am finding I can be accepted and have good health, which allows me to live in my truth.

5: Advocacy Doesn't Stop

I said this last year, and will probably keep saying it until I die: Advocacy is a skill that constantly needs to be refined. It comes up everywhere: a building is inaccessible, someone makes an ableist comment, or someone doesn't understand why inaccessibility is a major issue. Whatever the circumstance, it is important to be empowered in your disability identity to take up space and access what you have a legal right to access.

6: Don't Be Afraid To Ask

I live by the motto that the worst thing that can happen is someone says no, and nothing changes. A few weeks ago, I had a funny conversation where I was sharing all of the times I was able to shift an assignment or miss class because I asked if I could reschedule something to celebrate my birthday. Another time, I asked for an assignment extension because I didn't realize the movie we were watching in class was for an assignment (I was on a strong medication at the time, and paying attention was hard for me as a result). For each of these examples, I either got what I asked for or more. Others were amazed and shocked that I was accommodated. But I asked, and made it clear I understood if the answer was no. Being bold enough to ask for what I want means I have more of an opportunity to get it.

7: Perfectionism Isn't Worth It

I struggle with this because in school I really push myself. In theory it works- I got a 4.0 for both my undergrad and master's degree. But after each degree, I had to take a gap year because my health was that bad. I neglected other aspects of my health that meant I needed recovery time. Finding balance is healthy, and something I still struggle with.

8: Find Places To Go To Vent

Sometimes, I am frustrated. I don't like that I have to register for disability services each time I go back to get another degree. It's the same paperwork each time. I get annoyed when people imply I don't need a disability placard, or invite me places because they want some accommodation I have instead of me. Outside of HSP, I get annoyed when people promise to have clear communication with me because of my autism, and then don't, or when people make passive-aggressive comments about my autism or dietary restrictions. So, sometimes I need a place to complain. But, and this is the key, I then have to move on. For example, if I complain in a therapy session, it's not the only thing I ever talk about in therapy. Or if I ask to vent to a friend, I cap it at a certain point and then move on (see choosing joy). This allows me to have a place to share my frustrations, which can be healthy, without letting it consume me.

9: Be Honest

I have ideal versions of myself and what I can do. As a result, I've agreed to do things that aren't accessible for me. As I've been disabled for a longer period of time, I've stopped doing this as often, but I'm not perfect. I believe friends play different roles in people's lives, and I've learned that it's okay if I'm not always the going-out-to-a-party friend. That doesn't mean I'll lose all my friends. Instead, it means that when I see my friends, we all know that it's an activity everyone will enjoy because they can trust that I'll accommodate myself.

10: Express Thanks

When I think about my journey, a lot of it is self-focused because I am the one who lives with HSP every day. But I didn't get here alone. I have my family, friends, medical team, disability community, and all of you who read my blog each week. So, sincerely, thank you to all of you for following along, offering encouragement, and supporting me. I wouldn't be where I am today without it.

Thank you for reading about 10 lessons I have learned in honor of 10 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!