I’m going to make this quick, I have some places to go today. In 1994, my diagnosis of Scleroderma changed my life. Over the years, I
have received one diagnosis after another; major depression, anxiety disorder, PTSD, osteopenia, esophageal reflux, hiatal hernia, pulmonary fibrosis, slow motility, dysphagia, rheumatoid arthritis, sarcoidosis, three near-death experiences with a head injury, HELLP Syndrome and blood pressure so low, I started to circle the drain and I’m only 41. It wash’t easy, but I’m stable.
Yes, my disease will progress. Yes, I still have to age, but I could step off a curb tomorrow and get hit by a bus and it would all be over. The one thing I have learned that seems to be the only consistent and true thing in life is that life will change. If our health is bad, it will change. If our health is good, it will change. If we have a broken heart, that will change. What we are left with is the experience of living.
We may have to live in excruciating pain and it’s not always easy to be in the moment while in pain. And when we are in pain we have to remember that it will change. Better, worse -we have no control. The only thing we have is this moment. Then the next one.
Take this moment and do something. Something as heroic as getting out of your hospital bed, leaving your room only to go back. Getting out of bed s a victory every day. Savor your victories. There are neither big nor small. A victory is a victory.
Two years after my scleroderma diagnosis, my dad took me bungee jumping. Five years later I found myself barely able to walk, digest food properly and so much more I thought my life was over. It wasn’t. Scleroderma, sarcoidosis, rheumatoid arthritis and a gaggle of things thrown my way has not stopped me. Yes, I still have to do the tests, doctor’s appointments and medications, but I am still here. The worst of it was an interruption. A long, painful interruption and I survived. Don’t give up hope that you can and will survive. The truth is we all will die. It could be tomorrow or sixty years from now. Enjoy the moment. Be in the moment. The moments won’t always be good ones. Pay attention because if you don’t, you will miss the good moments. I’m not going to be bungee jumping again anytime soon, but there are many things I have yet to do and I am lucky enough to have made it here. Please, don’t give up hope. You will make it here too. Life’s a journey. If anyone told you this journey would be easy, they were lying.
Now, I’m going to go out and have a night of good moments. I’m thriving after twenty years since my onset of symptoms of scleroderma. Scleroderma still doesn’t have me. Scleroderma, sarcoidosis or whatever you do have doesn’t have you. There will be good times, just watch for them and they will happen. Don’t get lost in your diagnosis.
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