Thursday, June 30, 2016

Making Lemonade

You know the saying, "When life gives you lemons, make lemonade?" Sounds simple, right? Such a cute saying, makes everyone smile and think that when we get something we weren't expecting that we can just turn around and another even better opportunity is just sitting there waiting. Yeah...when is anything every that easy?? I think it's partially because life doesn't just give lemons and leave...

No, life comes up to you when you were expecting a bowl of cereal and throws a bunch of lemons at you and while you're trying not to get pelted by flying lemons, squeezes some lemon juice on top of your cereal. Not only do you end up with lemons that you weren't expecting (and were doing your best to avoid), but what you were looking forward to, gets ruined. Now you're left with soggy, sour cereal and a pile of lemons...and you're just supposed to make lemonade like nothing happened???


So where's my point in all this?

Life with mast cell disease (or any chronic illness) is often a matter of making lemonade. But it's never as easy as it sounds. When we're trying to make lemonade, it's because our cereal was ruined, we're left with a mess to clean up, and if we let the lemons just sit on the counter, they'll start rotting. We're not just figuring out how to make something positive out of a tough situation, we're also mourning what was and trying to piece together whatever plan was just shattered in front of us.

For me, one of the most challenging parts of having mast cell disease is having to let go of things I love. In high school I was so busy that we joked my parents actually saw more of me after I went away to college. I worked as a soccer referee and at Starbucks (plus practically at the barn since I spent so much time there =P). I competed on my horse, so I was riding multiple days a week and helping out at the barn. I played on 2 soccer teams, one with our homeschool group and one club team. I did an internship at the equine medical center. And yes, I also went to school =P I was homeschooled, but did most of my coursework either at our co-op or at the local community college. I was busier than a whole hive full of bees.

And I loved it.

Even in college, I kept up pretty much the same pace. I brought my horse with me the first 2 years, played soccer all 3 years, ran track my first year, swam my senior year, was a leader in FCA (Fellowship of Christian Athletes), in the Spanish and chemistry clubs, was a tutor for the chemistry department, worked as an assistant in the foreign language department, and double majored (almost had a minor, too). Oh, and I did it all in 3 years and probably went to bed after 10 pm a total of 6 times...

I'm not saying that to show how amazing I was at time management (although let's be honest, when it comes to organization, I'm pretty much the =P). I'm sharing this more as a point of reference...(my cereal is about to get lemoned...)

In the past 2.5 years, my cereal has been seriously lemoned. I had to give up my assistantship at Kent because I couldn't keep up with the 20 hours a week (let's be honest, it was closer to 30...Do I hear an AMEN fellow PhD students??) of teaching and research required. I stopped working at a running store here in Ohio because just the constant being on my feet and up and down fitting people for shoes was making me even more symptomatic. I worked just over 6 months at a physical therapy clinic doing billing and transcription only 15 hours a week but couldn't even keep that job as my symptoms are just too unpredictable and I was calling off too often.

I'll be honest, when I talked with my boss at the physical therapy clinic and agreed that I probably wasn't able to continue working there, it was frustrating. It's not that I was unjustly let go. It was because I knew I wasn't keeping up. I had called off 3 times in 3 weeks...and I only worked 2 days a week...can't say I didn't see it coming, but disappointing all the same.

My cereal bowl full of hopes of being able to teach, finish my degree, begin a career, etc. was being soaked in lemon juice. Plus, in the midst of all this, I'm seeing doctors, getting test results, being told we really don't know what is causing my symptoms and have no idea how to treat them...yeah, those would be the lemons that I am not so successful at avoiding.

I'm left with a bowlful of failed attempts to work and be productive and a pile of diagnoses and test results. Suddenly I had all the tools I needed to make lemonade but was too discouraged and worn down to even attempt. It wasn't what I was expecting. I wasn't prepared to make lemonade. I didn't want to make lemonade. I just wanted my cereal!

I had my moments where I just felt discouraged. I had to stop working at the running store which is something I truly enjoyed. I couldn't keep up at my teaching assistantship at Kent so I had to give that up. Now I couldn't even keep up with a sit-down desk job. It just made me feel like a failure. I'm not used to not being able to do things, so when I can't sometimes it's even more frustrating than it maybe should be.

But it's not like me to give up.

In high school I had the reputation of playing through injuries and being carried off the soccer field because I didn't know when to quit. My nickname in college was SVU from Law & Order: Special Victims Unit. Yes, I had my moments of crying over spilled milk (okay, more like sour, soggy cereal if we're sticking with my first analogy, but I'm on a cliche roll right now!). But then I dumped out the cereal and moved on to the lemons to see what I could make out of them. This isn't the first time I've been pelted with lemons...maybe I'm at bit tired of lemonade at this point, but I know that at least I can make it.

Last summer I lost the ability to run and that progressed to being almost unable to walk. It was one of the more scary symptoms I've dealt with because for months we had no idea what was causing it. We had no idea if it would be permanent or if it could be fixed. I had plenty of times where I just missed what I used to be able to do and was scared I would never get back to that point...but I didn't let myself stay there. Instead of just accepting being unable to walk as my new normal, I started physical therapy and kept searching for answers. It doesn't always work out this way, but this time I was able to regain a lot of what I lost. I'm not back to my baseline, but even my neurologist agreed that the improvement was impressive. I fought my way back to running again, and even though it's no where near where I used to be, I'm not waving a white flag yet, I'm staying in this battle...and I'm far from out...

So when I lost yet another job, I had my moments of discouragement, but I'm not giving up here either. Lemons, I got you beat! I'm pretty much an expert at lemonade at this point. Plus I still can't consistently eat solid food, so cereal really isn't a good choice for me anyway. Let's do this! Lemonade here I come...again...


  1. Cereal is overrated. :-) Lemonade is much more refreshing!

    I love how you write, Kylene, and I love your perspective. I love how God made you and how you desire to do all things well - whether it be resting or doing something else.

    Please say "hi" to Nick and come back to Virginia for a visit soon! Blessings to you.... Theresa O.

  2. Thank you Theresa! Will do, and we may be around for a quick weekend in September, I'll keep you posted!