Monday, October 5, 2015

Material Girl


No amount of vacations, jewelry or distraction are going to take away my disease. No magic combination of words will explain away my disease. No pill, treatment, medication, food or drink will eliminate my disease.

For the past 6 years I’ve been gearing up for, or recovering from shoulder surgery. To ease these disruptive and painful events in my life, I’ve received small charms, diamond earrings and rings. We’ve gone to Venice, Munich, Maine, PEI (twice!) and Disney (twice!). These were great trips and family memories and beautiful jewelry. In the end, I’ve still had 6 shoulder surgeries, #7 is tomorrow.

The fight might be delayed, dressed up or postponed – but it’s waiting for me after every holiday and glittering bit of jewelry. You can’t buy your way out of Rheumatoid Arthritis. You can’t buy your way out of my shoulder hell. This is the harsh reality of my life. It’s my fight, and nothing can take it away from me or make it better. It’s up to me. 

And I’m really tired. Utterly exhausted from the pain, the stress, the pressure to fit things in before my next surgery, the scheduling, the explanations, the sad eyes, people feeling sorry for me, the “you’re so young”. 

There is no easy way out of this disease and my surgeries. It’s a tough slog and there are no shortcuts. The only way I’m going to feel “better” about this is how I wrap my head around it. My attitude towards my surgeries has matured in time. At first, there was a certain amount of novelty. I’ve moved from passionately talking about the cool things surgeons can do to re-build my shoulder and public education on my disease to artfully dodging the “how is your shoulder” question that invariably comes up in conversation. 

I understand, it’s hard not to ask me when given my past 6 years. Almost every conversation has been “how’s your shoulder?”. People genuinely care, and just want me to be better. What they fail to understand, is that there is no “better” and I’m aiming to simply not get worse. At this point, I don’t want to educate or talk about the next scientifically advanced cool surgery I’m about to have. I just don’t want to talk about it period. I now view it as a giant pain in the ass, and I just want to get on with it. “Keep Calm and Carry On” and all that.

As a nod to one of the first albums I ever purchased, I’ve been a Madonna fan on and off for 30+ years and Material Girl just seemed to fit this post. While no amount of trinkets or trips will take away my disease, the happy memories I take from them are what makes my life wonderful. I have a good life, even if there are a few more bumps in my road than most.

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