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With Syringomyelia, there are two sides to every story. The side of the person suffering from the disease and the person suffering that feels like they are unable to help.
When I met the love of my life, I thought I had Syringomyelia under control. This seems to not be the case and it has become harder for my wife and I to accept.
The purpose of this story or blog is help those in the same situation to know that they are not the only one(s) in this boat without a paddle.
When I met my wife, it seemed that all of the issues related to Syringomyelia faded to the back of my mind. Love is an incredible pain-killer.
Where we are now in dealing with this disease is not a place neither of us want to be in. She has a perspective that is quite different from my own. Even though that may be the case, I would NEVER say, “You don’t have Syringomyelia, so you don’t understand.” We both suffer from this disease in our own way but together. It’s truly a ‘He Said, She Said’ or ‘He feels, She Feels’ scenario.
It’s a lot like this for us:
- He said: I hate hurting
- She said: I hate that you hurt
- He said: I wish the pain would go away
- She said: I wish I could take the pain away
- He said: I don’t want to talk about the pain and weakness
- She said: Please talk to me about what is bothering you
- He said: I don’t seem to be ticklish
- She said: Oh crap! I am!
- He said: I’m hurting
- She said: It hurts me that you are hurting
- He said: I can handle this
- She said: I will be there for you
- He said: I wish I didn’t feel helpless in fighting this
- She said: I wish I didn’t feel helpless in helping you
- He said: I want to be alone
- She said: You can be alone but with me 🙂
- He said: You should be with someone who is healthy
- She said: Your love is the healthy that I need 🙂
- He said: I’m tired of being tired
- She said: Just rest, I’ve got this
- He said: I don’t want to take anymore pills
- She said: I wish you didn’t need to, but it helps and I’ll get them for you
- He said: I’m tired of doctors
- She said: I know that you are, but we need to get as much help as we can
- He said: I love you
- She said: I love you more
My wife’s support is my life support and is better than any doctor, prescription, exercise or treatment that I could ever receive. Neither of us understand Syringomyelia but we always try to understand each other. She suffers with me and that hurts my heart. It is just as hard for me to understand what she is going through as it is for her to understand what I’m going through. The key for us is to listen to each other and TALK about it.
For a person to simply discount the other’s pain because it’s not the same, is creating their own prison of pain. I never want to be that kind of person. As a person suffering from this disease, I hate it! As my wife, she hates it just as much if not more.
If you suffer from Syringomyelia or any disease for that matter, don’t think someone else doesn’t understand just because they don’t suffer from it too. They are your cell mate. Why let it be solitary confinement? Why would you push people away and then say you are ‘alone’? Open your heart, open your mind and for God’s sake open your mouth. If they love you or care for you, then talk to them, love them and know that they are on your side.
My wife isn’t a caregiver, she is my wife!
Proverbs 31:10-31 NIV An excellent wife who can find? She is far more precious than jewels. The heart of her husband trusts in her, and he will have no lack of gain. She does him good, and not harm, all the days of her life. She seeks wool and flax, and works with willing hands. She is like the ships of the merchant; she brings her food from afar.