Learning to Laugh About My Illness

During my diagnosis, there were days when, while I still didn’t know what was going in my body, and while I still could not sit through class because of my symptoms, I just wanted to be at school.  I was blessed that Kadima Hebrew Academy was very understanding and allowed me to come to school during lunch or recess just to spend time with my classmates.  I made one such visit shortly after I started having double vision.  I remember my friends Ayal Cusner and Oren Gal as seventh graders wanted to know everything about what they looked like from my double vision perspective.  They thought it was so cool!  The topic sparked an entire conversation on who they would and would not want to see double of.  For example, it was agreed that no one would want to see TWO of their teachers.  Their reaction actually eased any discomfort I may have had.  To them it was something cool and fun that they could turn into a silly discussion.

My family also played a key role in bringing laughter to my symptoms.  Throughout the years I have struggled a lot with balance, especially when I’m tired.  In middle school and high school it was just known that after 8 or 9pm I would be stumbling all over the place and walking into things.  My family would always joke about it in a conversation that might look like this:

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Brother:  Mom Kaley’s been drinking again…

Dad:  We’ve gotta cut her off, she has school in the morning, no more boozing!

Mom:  Eh, as long as she’s having fun, you only live once!

describe the imageWe would all have a great laugh.  Of course they would help me when I needed it, especially my brother.  He would walk with me around the house during those late “drunken” nights when I just did not feel stable on my feet.

 My favorite part of sleepovers with friends or overnight trips with school was when everyone saw “drunk Kaley” come out.  Some people might be uncomfortable with this and everyone is different.  For me, this was a way for those around me to know about my symptoms and challenges in a safe way.  We made it fun and that protected me.

describe the imageMy family and friends still bring laughter into my struggle.  They all know I have a terrible memory as a result of my MS and they play incredible jokes on me because of it.  Sometimes they try to get out of things by trying to convince me we already talked about something when we never did but they don’t want me to discover that they actually neglected to bring it up.  It’s really amusing for me to watch them work so hard at convincing me and then just burst out laughing when they realize I am questioning whether or not something actually happened.

I used to travel a lot in high school, especially for fundraising events or speaking engagements for my non profit Youth Against MS (YAMS).  At the time, my MS treatment involved self injections so I was always traveling with needles.  My parents would joke about my “drug problem” when we went through airport security.  It honestly just eased any tension or nerves.  And on school trips fellow students and teachers alike would lightheartedly make remarks about how I was going to “shoot up” again.  Everyone would always burst into laughter and then of course two people would volunteer to help me if I needed.

describe the imageOf course people need to be sensitive and you have to be pretty close to me to laugh with me or at me about it.  If you have a patient in your life who might benefit from laughter, you still need to do so carefully and respectfully.  I remember the first time my best friend Elana’s fiancé tested the waters.  He very subtly made a joke about my memory then waited to see my reaction.  Not only did I get a great laugh from it, I actually commended his cleverness.  He then openly admitted that he wasn’t sure if it was safe or permissible for him to joke with me about these things yet (or ever), and that statement alone made a huge difference.  I knew he wasn’t looking down upon me and that this was a way that we could connect, which is important since we share a best friend!  The irony of all of this is that I called him just now since I couldn’t remember the details of the interaction and he pointed out how funny it is that I had to call because I forgot what his first “MS joke” was about.  And we laughed again.

I have had hysterical moments in romantic relationships which I will share when I blog more about relationships.  But one that really stands out was when I was in the ER recently and the person I was dating at the time was there with me.  I had to tell the doctor something very uncomfortable, unusual, and just downright embarrassing.  And I had to say it all in Hebrew, making the words much less appealing.  He and I held back laughter as I practiced saying it and then he finally just said “you know I’m going to burst out laughing when you explain this to the doctor right?”  Being able to laugh about an uncomfortable situation has helped me so many times over the years.  I view it as a gift that the people close to me can give me.  There are times when things are incredibly frustrating and emotional.  Laughter does not diminish the seriousness of a situation and does not ignore the moments of discomfort.  But it certainly helps me feel safe and loved.  Well, and it’s fun!

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Please share some things that you and your families have learned to laugh about in regards to illness.  I’d love some inspiration for new jokes!

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