Disability 101: A request of my friend
July 18, 2010
Letter to my dear friend:
Thank you from the depths of my heart for the help you have given me. During one of my darkest moments, you were there reassuring me. When I was most frightened, you figured out what needed to be done and did it. When I just couldn’t manage, you found a solution.
You offered your time, love, energy and even your money
to help me with my transition learning to be a person with a disability. I will always love you for all of your help.
Now I have a favor to ask. You’ve taken it a little too far. I need you to stop, breathe and realize that I will be okay.
I know you are worried about me. You’ve watched my physical condition deteriorate. You worry about whether I will be okay, about how I feel, and about what will happen to me. I’ve reached a point with my MS that I’m pretty sure I’ll be okay. I need you to reach the point that you realize I will be okay.
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Even if I never walk again,
I will be okay. Even if I keep spasming, I will be okay. Even if I frequently experience pain, I will be okay. I will be okay because I still have a life to live. I fully intend to live it.
This is what I need from you. When I tell you I’ve started an exciting new project, something that speaks to my heart but also will take some time and energy, please don’t respond to me with worry. When I say, “I’m so excited I’ve started this project!” I want you to say, “I am so excited for you!” I don’t want you to say “Are you sure you should be doing this? Are you sure you are going to be okay?”
Even if you don’t actually say these words, but I can see your concern and worry in your eyes and hear it in your voice, you are telling me to stop living my life. You are telling me to quit living and sit out. I need your encouragement to live my life.
When we go out into the world together, I don’t want you to go as my helper. I want you to go as my friend. I want you to laugh with me, smell the flowers with me, and be silly with me.
Please don’t come with me as my helper, always looking to help me with whatever I might need, always worrying about something going wrong and ready to save the day. If you do that, I know you don’t see me as a friend anymore. You just see me as my disability, an obligation, a bother, a responsibility.
I might need help every now and then. If I do, I’ll let you know. I just ask you help me quickly, and then let’s set that aside. Please just be my friend again and laugh, dance and be silly with me.
I need you to pretend I don’t have a disability. Sometimes we have to acknowledge my disability, deal with it and work around it. Please, please don’t get stuck in that.
Sometimes we can ignore my disability. I can just be me, you can just be you and we can be friends again. Inside of this body that doesn’t work so well, I’m still me. Look in my eyes and you will find me inside of here. That’s who I want you to talk to and play with.
I’m still me.
Note to reader: substitute “family member” for “friend” as appropriate.