Tuesday, February 4, 2014

The Best Decision

Although things are usually lighthearted and (some people say) funny around here, I'm not one to ignore the more serious or sad issues that happen in my life.

I met Marion through email in June 2011, just 2 weeks after Zoe was born. A colleague of mine asked if I was interested in doing some private contract work with a patient who was being discharged from the PT clinic I used to work at.

I was hesitant.
A - I just had my first baby.
B - A year earlier, I quit working because of a relapse that paralyzed my arm.

Luckily, I said yes, and it was the best decision I ever made. Marion came to me at a time where I had all but lost my identity as a PT. Working with her gave me purpose that I had lost since my relapse. It gave me an identity beyond my disability. Beyond being a mom.

It was a rare situation. I saw her 2-3 times a week, in her home, for two and a half years. That is a lot of time in a profession where treating someone for 3 months is considered lengthy.

I looked forward to our visits. Initially, just to get a break from parenting, then to keep my head in the PT game, but then...to spend time with her.

People in her apartment complex would see us working in the pool and ask me, "Oh, is she rehabbing to get better?"

I'd reply, "I'm sorry, I can't discuss patient care with you." when on the inside I was thinking...No, she has ALS. Getting better is not one of the options.

ALS was on the table when I started getting foot drop in 2006.

MS is a much better alternative.

Nonetheless, I know a little something about not being able to move. About your muscles not listening to your brain. Just sitting there sizzling with fasciculations when in your head you just raised your arm to scratch your ear.

I don't, however, know anything about not being able to swallow. Or talk. Or breathe.

I'm not sure there are many diagnoses more cruel than ALS. Few things have the finality that comes along with what is sometimes called Lou Gehrig's Disease.

My entire family rallied in order to allow me to see Marion consistently. Yannos would pick up extra chores to ensure I had enough energy to work. My mom and mother-in-law watched Zoe before I was ready to leave her. Even my neighbor who watches the kids while I work was rooting for her. Marion was a priority in our house. Being there for her was important to me and it was certainly more than just work.

In fact, calling her a patient sounds absurd. She is my friend.

When I found out about being pregnant with Aleko I had a wave of disappointment, as I worried about the lapse in Marion's care. Not many PTs get in the water with people, let alone drive to their house to do it. Even if I did find someone else, I didn't trust other people.  I always wanted more for her. More comprehensive exercises. More compassionate care. More time.

More. Time.

Sometimes Marion would ask me questions about my treatment decisions. I always answered scientifically with facts about muscle fatigue or inhibition or buoyancy, but for some reason, with Marion, I just felt it. I knew what she needed. I knew when she needed to be pushed and when she needed me to back off. I knew when she needed help up the stairs out of the pool and when she could get into her wheelchair herself. I got her.

When Marion died on Friday, I was heartbroken.

It seems silly to be surprised by the death of someone with ALS, but I was. It is weird how something you know is coming can catch you so off guard. It's also weird that my family hasn't even met this person who is so important to me, which has been a little isolating.

I will be forever grateful for all that Marion contributed to my life. She saved me. She saved my sanity by giving me an adult to not only talk to, but thoroughly enjoy. She saved my mind by giving me something to contemplate. She saved my career by showing me that even with my limitations, I am still relevant.

I only have one nice thing to say to ALS. Without you, I never would have gotten to spend a couple of years with one of the nicest and most wonderful people I have ever known.

She will always be in my heart.

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