For the past two years, pipes have been sticking out of my chest. I have had a port beneath the skin just under my collarbone. Many treatments have caused me to catch numerous infections floating around, so I have had to wear a medical mask when in public. I have experienced whispers, pointing, and flat-out stares. People have made assumptions about me, but they also have asked caring questions. I have been prayed for by strangers and dismissed by friends. And I have had to draw on strength I didn’t even know I had.
Before my diagnosis, I took “normality” for granted. I didn’t expect these trials or to struggle every day just to survive. I thought I would be traveling along a certain path: finish school, go to university, get a good job, find my Prince Charming, get married, and have four children. I thought my problems were huge, but I have come to see that they were insignificant in the greater scheme of things. I have been allowed a different point of view of my life and now I see what is truly important.
Chronic illness has ripped me to pieces, but it has also gently placed the pieces back together. I may not be exactly as I was before, but I am a better me. I have learned patience, kindness, empathy, and compassion. I have learned that I need to set boundaries. I have learned to tell those who are important in my life that I love them. I have felt like an outcast, and then found a new tribe of people who love me for me — warts and all!
I took a year longer to finish school and took some time to get into a job that I could actually manage and enjoy. I met my Prince Charming (after finding some frogs) and got married.
Sadly, the part about having children has had to fall away. Medication destroyed my ability to have kids. I wish that I had been warned of that from the beginning. I feel like I have lost a piece of myself that I never really had. I have a deeply rooted pain that I don’t think will ever go away.
However, there is so much to be grateful for. Every day I look for something “special” that makes me smile. I didn’t set a New Year’s resolution for 2019. Instead, I chose a word to focus on in all aspects of life: HEALTHY. I will concentrate on that word in my relationships, lifestyle, eating habits, interactions, thoughts, and life in general. By focusing on this positive word, I have already had a turnaround in life. I appreciate the small things. I am no longer afraid of death. If it is my time, then I will accept that. But for now, life is good. It is filled with love, rainbows, and happiness.
Myasthenia Gravis 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.