Sarcoidosis Doesn’t Have to Take Away Your Determination

I received a phone call about a week ago from one of my cousins, who is like a little brother to me. We’ve always been very close, and before my cousin’s father passed away from cancer, he asked me to “look after” my cousin, which I’ve been doing for the past 18 years.

My cousin asked me to take a ride with him to Harrisburg, Pennsylvania. He had some business to take care of, and thought it would be fun for me to get out of the house and take a nice, scenic ride through the state. I wasn’t sure I was up for the trip, because the last time I’d driven to Harrisburg was to take my daughter back to school two years ago, right before my first spontaneous pneumothorax.

I told him I had to think about it because I hadn’t been that far in so long, and wasn’t really feeling comfortable about highway driving. He said he had also invited our uncle along for the ride, so it would be the three of us — a male-bonding outing. Our uncle is a riot! He can bring tears of laughter with his family stories. Knowing this, I considered the ride more seriously.

Two days before the trip, my cousin called again to remind me of it and to see if I had made a decision about participating in our male-bonding journey. I said I would go, and we finalized the trip details. After we ended our call, I thought to myself, “What the hell did I just do?” I’d just signed up for a four-hour car trip. I could sense myself becoming anxious, but I’d given him my word, so I was Harrisburg-bound.

The day of reckoning

My cousin rang me up and said he would pick me up by 5:30 a.m. I got myself together, washed and dressed, made some tea, and grabbed a spare oxygen tank for the ride. We picked up our uncle and headed for the Pennsylvania Turnpike. Not long into the ride, I felt anxious and claustrophobic, but my uncle had me and my cousin laughing so much, I started forgetting how I was feeling and started enjoying the ride.

As we continued on, we reminisced about our past family reunions, family members who aren’t with us anymore, and the ones we’re still stuck with. I had to remind my cousin that I was still trying to get comfortable with speed limits. (He and his father had run the family auto repair business when my grandfather retired, so every time he drives, he envisions himself in an Indy race.)

The pieces started coming back together

We made it to Harrisburg, my cousin handled his business, and we made our way back to Philly. As uncomfortable as the trip had initially made me feel, I felt like I was getting something back from it. The more we talked about our family and laughed, the more I thought about how resilient and funny these folks were and how their respective medical issues never shuttered or stopped them.

Pulmonary sarcoidosis has done several things to me over the past two years: It stole my breathing, caused me anxiety and post-traumatic stress disorder, and made me somewhat homebound, by choice. What it also did for me was give me more courage and awaken my sense of resilience.

You are your leap of faith

We made it back to Philly safe and sound. I thanked my cousin for inviting me on his adventure and told him that on our next trip, he should take it easy on the speed limit.

It just goes to show that one person can make a big difference. At a time when I wasn’t sure about my abilities, my cousin gave me a choice: Be satisfied living in a fishbowl or reclaim some of what I had lost. I chose to reclaim my abilities.

After I got home, I settled in with a small cocktail and thought about the events of the day. I started feeling more satisfied that I had accomplished something I hadn’t done in two years. I thought about all I had accomplished before the pneumothorax and the life adjustments that came with it.

I made a decision that I’m going to do more of the things I used to do, and I’m going to try new things that I’ve always wanted to. And with that said, I enrolled in an online nutrition course. I figure that if I start fixing the inside of my body, the outside will benefit. It’s going to be challenging, but I’m ready for it; otherwise, I’ll be accepting what sarcoidosis gave me.

***

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.