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You've Got to Love It

Loving Yourself Means Loving Your Disease


I read a lot of the posts people make on the Ataxia and MSA dedicated FaceBook pages. A few months ago I was struck by how many people expressed their down-right hatred for ataxia. Rightly so! Neuro-diseases are life-disturbing mentally exhausting traumatic events. I don't really care which one you have, none of them are a walk in the park. I admit, I was getting into a similar headspace.


One day in the kitchen I said it out loud, "I hate this." The moment I said it something clicked in me causing an inner voice to say, "If you hate this, how can you love yourself? Ataxia is as much a part of me as my left ear or my fondness for Italian food. If I hate Ataxia then I must truly hate an important part of me. I don't hate me. I love me and thus, I need to love this disease."


I can already hear people's voices saying things like, 'You are not your disease.' I'm going to suggest that while the disease does not consume me, it exists within me and is actually redefining who I am now. It adds a different layer to who I am, just like receiving an academic degree adds a layer to oneself. I think that if I deeply believed that I hate this "thing" that is happening to me then I give control over to it. The disease starts to taint everything I try and want to do which in turn causes me to dislike who I am becoming.

I decided at that moment that I was not going to give ataxia (or MSA, PSP, ALS, cancer, etc.) that kind of power.

I immediately grabbed my iPad and started a list of things I love about ataxia. I came up with 25 things. Some are whimsical. Some are emotional. All of them are true. And, just because I love ataxia, doesn't mean I have to like it all the time. We love our partner, kids, dogs, but we don't always have to like them.


Here is my list and I challenge you to make a list of things you love about ataxia and see if it doesn't help you to change your attitude a bit regarding being the recipient of a really difficult condition. And by the way, a little dark humour doesn't hurt.


25 Reasons to Love Ataxia

1. You get to have a handicapped parking card. Finally rock star parking.

2. You get to see the worried look on store security as they follow you thinking you are drunk.

3. You get to have 1 or more naps each day.

4. You get to play “open the hanger, here comes the spoon” at mealtimes.

5. You get to circle around the kitchen like a roulette wheel hoping you will stop at the place where you can’t remember why you needed to go there.

6. You get to wobble to your car and scare the crap out of other people watching as you climb behind the wheel.

7. You get excused from drying dishes at a friend’s home since they know your break record.

8. You get to learn new skills like how to propel and manage a wheelchair.

9. You get to spend an inordinate amount of money on overpriced adaptive products and home renovations.

10. You get to develop a wonderfully supportive relationship with a physiotherapist.

11. You get to explain to your friends about a rare disease and enjoy their support and love.

12. You get to learn how to ride a trike again.

13. You get to wear thick incontinence products for urinary urgency that also help you to maintain a safe wide walking gait.

14. You get to accessorize any outfit with trekking poles.

15. You get to drop anything that you shouldn’t, and laugh.

16. You get to naturally do an imitation of Elaine from Seinfeld dancing while you are standing doing the dishes.

17. You get to go to grocery stores, big box stores, airports, or museums and become nauseated from the overstimulation but also feel like you are having a trip but have never left the farm.

18. You get to feel drunk and high all the time but without a hangover.

19. You get to re-educate your ableism self and gain a greater appreciation and empathy for others who have disabilities living in a very ableist world.

20. You get to deeply appreciate hugs when they are offered.

21. You get to learn that you are not the only case of ataxia, but one of many within a community that offers support from the heart.

22. You get to learn about your own resiliency, determination, tenacity, and pride each shaky, wobbly day.

23. You get to know that you offer teachable moments to those little kids who stare at you as you wobble walk with your trekking poles, or rollator, or push your wheelchair.

24. You get to channel your life coach Roy Kent repeatedly throughout the day and laugh and giggle or sometimes just sigh at yourself yet again.

25. You get to climb into bed weary from the day and look up at the sign on the ceiling that says, “I nailed this one! Bring on tomorrow.”

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