Thursday, April 11, 2013

I may look normal

 In my searches, I can across a letter that was written by another CIDP stem cell patient named Gwen Lanier. Her blog can be seen at http://cidpourjourney.wordpress.com/about/.

Reading this letter help me to realize that I am not alone in my struggles and there are others out there who are suffering too. The great thing about Gwen is she wrote a letter that describes the struggles of a CIDP patient in a way that I have never been able to. I feel it is important to share this letter, in the hopes that someone else may stumble upon this blog and find the same comfort from Gwen's words as I did.


TO FRIENDS AND FAMILY:

I look normal. Don’t let my outward appearance fool you; I am in pain. I am not the same person I was a year ago, or two years ago, or 4, depending on when it was you last saw me. I look healthy; I am not.

My condition changes from day to day, sometimes even hour to hour. Today I might be able to walk with you a few miles; tomorrow I may not even be able to get up off the couch. A week ago I felt almost human; next week I may feel like something less than what the cat drags in. I may want to do all the same things I used to: to work out, take long walks, socialize, keep some semblance of household order, but I may not be capable of it.

If I say, “maybe later”, please understand and accept this for what it is which is not an excuse. It is a reason. I don’t enjoy my new limitations; I hate it. I might even be physically able to do today what you wish for me to do, but if I know without a shadow of a doubt that pleasing you will mean for me later an incredible amount of pain, I must say no. I’m not lazy. I just hurt.

I absolutely do not want pity. This is no reason to feel sorry for me–life is not perfect, and life happens to us all. This is the hand I have been dealt, and I intend to play it out. I don’t blame the world for what I suffer, I don’t rally against God. This is no one’s fault. Not even my own.
I do not crave attention. I didn’t decide one day that I was tired of living like a normal person, and that the means to a life of never again having to work, having my whims catered to, having friends and family treat me specially involved creating symptoms no one could see under a microscope. I loved my life the way it was; I was never depressed and I had plans. This isn’t a cry for your attention. It just IS.

I don’t feel sorry for myself. Why should I? Things don’t always work out the way you’d like them to–this is one of those times. I can live with who I am now. I may not enjoy each day as much as I used to, but I still live for each day, and embrace whatever I can get out of life. Pain is my companion… but pain is not me.

The truly hard part–if you cannot accept me for who I am now, I am sorry for you. I won’t waste precious energy chasing after you to cling to a friendship that probably wasn’t as strong as I had once believed it to be. I cannot force myself to readopt who I was before and reassume the same roles. In this–preserving myself and my state of mind–I have to be selfish. If you cannot accept that I might not be able to contact you every day as I did before, or engage in the activities we once did, whether it was training together and working out together or just bowling, then do me a favor and let’s quietly part ways with no ill feelings.

My life is going in new directions, and for me that might not be a bad thing. If the changes I have gone through disturb you, hold your criticism. I don’t need it. I don’t want it.

Life deals us all a bad hand occasionally. This is my turn. It happens, I accept it. I hope that you can, too.

4 comments:

  1. I am so thankful to Gwen for sharing her story and for explaining how you and others with CIDP live their lives. I am so very thankful for your bravery and courage for not giving up and to keep searching, Bryan. You truly are an inspiration and I hope your message reaches others that have CIDP and find your blog helpful. I also thank God for the people that shared their story that is leading you to your new adventure in Chicago. We love you so much!!!

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  2. This is a really good letter. It is true for a lot of people who suffer from "invisible illnesses". My illness is not nearly as severe as yours, but I do understand. I have fibromyalsia, compartment syndrome and compressed vertebrae in my spine. I look fine and some days I feel fine, but some days it hurts just to breathe. There are very few people, other than someone personally touched by such an illness, who understand.I'm so glad you are sharing your journey with all of us. You are blessed to have so much love and support. Shawn, Marissa and I are all praying for you.

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  3. Thank you for posting this, Bryan (and Gwen for writing it). I have been pocketing my emotions for the past year in order to remain happy and positive on the outside, but seeing these words unleashed my feelings and helped me to understand that I'm not alone and it's okay to not be 100% like I was a year ago. I cannot even count the number of times I've felt guilty for skipping out on events or not cooking dinner for my kids, not to mention having to leave my job. This letter really helped me to put things in perspective. I NEED rest. I NEED down time. I NEED help from friends and family. I'm not being lazy, and I just want to feel less pain and weakness. Thank you for helping me to cope just with these words. I'm looking forward to following your journey, and hoping you have great success!

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  4. Amazing! You made me cry and I feel better now! Thank you.

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