Cattitude.

It has been a few weeks since I wrote last and exactly one month since I announced my condition.

During this past month so much has happened.  I met with Dr. Perlman and was given hope that a viable drug trial may be as close as six months away and that an actual cure may not be too far behind. I registered with CORDS, the Coordination of Rare Diseases registry, so that I would be considered for any possible drug trials or other research opportunities.  Just yesterday, NAF announced a milestone for the registry: the first request from an ataxia researcher to  access the database for recruitment of research participants has been approved.  I scheduled my physical therapy, which begins on July 8.  I expressly requested a therapist with knowledge of neurological conditions and have been paired with someone who has an interest in neurology.

I traveled to Ireland with Corby and some of our good friends.  I am told that it rains nearly every day in Ireland, but for us it was 70 degrees and sunny for a record 10 days!  As we drove the winding roads along the coast with the wind in my hair, I felt freedom.  With Corby’s assistance, I was able to climb to the highest vantage point to take in the incredible beauty of the Cliffs of Moher and descend into remains of the Kells Priory.  I walked more than I have walked in a long time and my feet did not fail me once.  I was incredibly thankful.

Since returning home, I have made it a goal to walk every day – at least for 20 minutes, but more if I feel up to it – and have even dusted off the old fitbit to hold myself accountable.  I’ve cut all wheat and soy from my diet, limited my consumption of sugars (no sugar added, no HFCS, no artificial sweeteners; only naturally occurring sugar), and otherwise tried to adhere to the ataxia diet.  Ireland was my send-off to drinking and since then I have not had a drop of beer or whiskey.  I’ve limited my wine consumption to a glass or two on the weekend.  I’ve added the micronutrients that are most beneficial for someone with ataxia. In addition to taking Coq-Q 10 (my daily coke habit), I’ve added DHA and Resveratrol into the mix.  Not to get all scientific and boring here, but my condition, SCA-1, worsens as a defective gene (Ataxin 1) misfolds protein produced by the gene (I’ve never been very good at laundry and now I know why.  I am genetically predisposed to fold poorly).  DHA, or docosahexaenoic acid, which is part of the omega-3 family of fatty acids, has been shown to protects cells from this defect.  While some members of the nutrition community advise against taking DHA or other omega-3 fatty acids derived from fish, since it is currently the best option for me to keep my brain cells folding properly, I am fishing it up.  The brand I am taking is sustainable and certified by Friend of the Sea.  Next up, I plan to add Methyl B-12 (more help to the brain) and Magnesium Aspartate (helps fend off muscle cramping) to the mix, and then I will be a full-fledged pill popper.

Yesterday, I had my first visit with Dr. Jeremy since he dropped the boom with my diagnosis last month.  Unlike my prior visits, there were no tears.  I think, for me, the tears were an expression of fear.  Now that I know my diagnosis, I’ve replaced fear with fight.  Dr. Jeremy joked that it wasn’t enough to ace my SARA score, I needed to get an A+.  You’re damn right.

We talked about the changes I have made in terms of diet and exercise and what more I could be doing.  I’ve asked for a referral to a speech therapist to help work through very small changes in my speech that I have noticed and stave off any further changes.  Dr. Jeremy will also be connecting me with the proper folks in UCLA Neurology to help set up a research foundation, which is how I will eventually be directing fundraising efforts.

I work in Century City.  For those of you who are not well familiar with Los Angeles, Century City is one of the main business hubs of LA – full of tall buildings, and people in business attire, and business chatter.  I am one of those business people (minus the attire, since I don’t much care for suits) – a UCLA and Georgetown educated employment lawyer who was just awarded a coveted “Rising Star” from Super Lawyers.  It means I am one of the top lawyers under 40 in labor and employment law.  I’ll tell you, if I had received this honor a year ago, I would have shouted it from the rooftops, but something in me has shifted.  While it is nice to be recognized as a good lawyer, I am no longer satisfied with being recognized for my professional achievements.  Thank you very much for the plaque, Super Lawyers, but now I want a plaque with something different written on it: SHE BEAT ATAXIA.  This is now, for me, my life’s ambition and I will work tirelessly to achieve it.

If you follow me on Facebook, you will already know I have a bit of an affection for a car that parks in my work parking structure, or, really, for a bumper sticker that adorns the car.  It says simply: cattitude.  I frickin LOVE that bumper sticker and I love that some person who commutes daily to a business hub full of business attire and business chatter – who is parking in a structure full of BMW’s and Audi’s and Maserati’s – is rocking a cattitude sticker on her car.  Now, before you go and call me a crazy cat lady, know this: I do not have any cats and cats have nothing to do with why I love the sticker.  I love the sticker because I imagine the person who put that on their car (beyond probably loving cats) is choosing to embrace life and march to her own drum beat.  She is more than her desk job.  She has cattitude, whatever that means.  And good for her.

I think more people need to dial back the seriousness and focus on living.  I remember when I was starting out as a lawyer I forwarded a humorous email from my personal email account to a bunch of friends.  One of them sent me a missive back that I should consider curbing the forwards because I was a professional now and it would send the wrong message.  I am sure it was well-intended but I was so taken aback.  I am who I am.  No degree could ever change that.

I feel the same about my diagnosis.  I am who I am.  I will tackle things with positivity and humor because I really do not know how to do this any other way.  The one word that I would ask you to shelve, if you have even thought to use it, is the word “terminal.”  I will not be using that word.  I spit on that word.  Terminal does not exist in a world in which a cure is possible and I am living in the world of possibility.  Yes, it is true that until a cure is found, death is inevitable, but I am so far from that point that it should not be what consumes me.  What consumes me are two objectives: finding a cure and making sure I am in the absolute best shape I can be when that cure arrives – both physically and mentally.

I am told that if you look for signs that the world is listening (or a higher power, if you believe in one), you will find them.  Yesterday, as I drove up the 405 to see Dr. Jeremy, I was on autopilot for a bit while thinking about what I wanted to discuss.  When I stopped thinking and started observing the cars around me, I realized I was following a car with a cattitude sticker.  Odd coincidence, I thought, since I have only ever seen the one adorning the car in my work parking lot.  It made me smile.

After the visit with Dr. Jeremy, I walked out to my car.  No joke, I was parked next to a car with a cattitude sticker.  I literally laughed out loud (and said “no fucking way” if we are being honest).  What do I get out of this experience?  Well, similar to seeing the mourning caterpillar just when I needed to, seeing this sticker on the bookends of my visit to my neurologist told me this: You’ve got this.

You see, cats are said to have nine lives, but I only need one.  Now is the time to make it count.