All I Have Is Multiple Sclerosis
This is a continuing story about my own disease, multiple sclerosis. To start at the beginning, with an explanation of what ms is, please read My Own Disease first.
I can tell you one fact about my own disease. It is the most frustrating challenge I have had in 60 years. It is also the reason I walk today. Yes, I am frustrated much of the time. Yes, I am extremely grateful that all I have is multiple sclerosis.
1967 was a horrible year for my family. My father died on June 19 of 1967, of an aneurysm. My only living grandfather died on December 19, of a heart attack. Between those two deaths, we attended 15 other funerals of close family and friends. I was 13 years old. Not everyone gets to experience life and death at a young age.
Aneurysms run in my family. They are prevalent enough that most neurosurgeons advised us that one in five children would have one. My father died of an aneurysm at 43 years old. So did 8 of his brothers and sisters. His father was 55 when he died of his aneurysm. I learned at a young age what an aneurysm was and that it killed.
When the doctor told me the results of the MRI in 2000, I laughed! I did NOT have an aneurysm. He said so! He said I would live! All I had was multiple sclerosis. I had it made!
I said I was grateful that all I have is ms. My sister was diagnosed with trigeminal neuralgia 11 years ago. Normally, the longest survivor of that disease goes insane and commits suicide within 10 years. It is known as the most pain any human can ever feel.
My brother-in-law had a heart attack in his 50’s. That’s scary. Heart attacks kill people! I have never had a heart attack.
A good friend, 76 years old, was diagnosed with cancer. She died in two months. Her pain was excruciating for those months. I can’t even imagine what she experienced.
I have another friend was diagnosed with cancer and given less than a year to live. How do you survive that? I was told I had a disease that does not kill anyone, and that I could possibly live a long and fruitful life. Sure, there might be pain. Sure, there might be periods of blindness. Sure, there might be periods of not being able to function at all. But I would live!
Through my own disease, I learned the hardest word in the english language. For an adult that lived most of their lives being independent, there is a word that is harder than other word to say with meaning. It means you can’t be fully independent any more. It means relying on others for what you need, sometimes. It means no longer doing what you want, when you want. That word? H-E-L-P. My own disease taught me that sometimes, help is absolutely necessary. I can not always open the jar, the can, the bottle. I went through an entire summer unable to open a bottle of water without tools. Yes, h-e-l-p was needed.
Having an aneurysm is not as scary today as in 1967. My father was the third person in the United States to have surgery to repair an aneurysm. His surgery failed, but that surgery today saves hundreds if not thousands. Remember those neurosurgeons? They were right. I was diagnosed with a cerebral aneurysm of the right cerebral artery in 2009. It is in a location that makes it too dangerous to operate on, and coiling won’t work. Some people have all the luck. I have outlived most of my fathers family. I am going to be 60 in October. In my family, that makes me really old, as in the second oldest living male in the family.
I have my own disease. I have lost my vision for 6 months. I have lost all feeling in the left hand and wrist. I have had pain that I can not describe. I have had skin that burned if touched, as if you held a hot metal to it. I have had trigeminal neuralgia pain on both sides of my head. I lost the use of the right arm for over 18 months. Most of these symptoms have come and gone. But you know what? I am alive! I have my own disease, and no one ever said I would die from it. Today, my own disease has weakened my entire right side. I have no muscles at all in the right shoulder and arm. It is just skin and bones. But, I am alive and able to walk!
Links to information:
What Is MS?