Monday, January 13, 2014

Four Walls

January 13, 2014


Thursday will mark 6 months since my stem cells were infused into my chemo depleted body. The experience of my recovery from the stem cell transplant has brought about many changes. I am no longer taking any medications to suppress my immune system or treat my CIDP. I know the procedure worked and my days of being hooked up to IVs are over. I do not know how much of my former self I will recover and that is the mental challenge I am now facing.

After my failed work attempt and my back-aching fall it is apparent that I still have a ways to go in my recovery. Over the past week I have been fairly secluded within the four walls of my living room. Each day these walls seem to be inching in on me. Slowing smothering me and breaking my spirit. Sure I know how to put on the smile and charm to others…I have been doing that all my life. Smiling through the misery. My family are the ones that truly suffers. Ann, Taylor, and Tori have to deal with the highs and lows of my depression. They see the real impact these four walls have on me.

Sharing these feelings is not something that I wanted to do. I prefer my blog to be uplifting and positive, but it has been brought to my attention that this “funk” or “rough patch” can happen. Not everyone will experience these lows, but some do. 

This past weekend I watched a movie I had not seen in sometime. The movie was about a former mental patient who turns his life around and becomes a doctor. At one point in the movie there is a reference made to him being in a mental hospital and how the doctors cured him. His response was that it was not the doctors who cured him but the patients. He realized that by helping others he forgot all about his problems. If you haven’t guessed by now the movie was “Patch Adams”.

After watching that scene in the movie it made me realize how important helping others is to me. When I was in Chicago going through my transplant it was never about how I was doing. I was always more concerned with the other patients on the floor. My motivation for walking the hallways was to catch a glimpse of my fellow Dr. Burt patients. The moment I returned home from Chicago I was already laying the foundation to find ways to help others.

 However, the people I need to help the most are my family. I carry a huge burden of guilt for not being “the man of the house” and seeing all that Ann does. Right now I am uncertain of the direction I am heading. Sometimes a step back gives one the perspective to see a clearer path. Uncertainty, doubts, fear, and anger have all piled into these four walls of my living room. 

I know that I am in good hands and God has a plan for me. Just wanted to share that the "post transplant blues" may occur so that others going through it will not feel alone.

 

6 comments:

  1. Thanks for having the courage to share you thoughts and feelings. God Bless.
    P.S. I gotta go back and watch Patch Adams now.

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    1. I am just trying to accurately document my journey and pay it forward at the same time. Thanks Mark.

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  2. You don't need to feel guilty about 'not being the man of the house'. I know much easier said than done, but I do speak from similar experience. I have the female version of that. I went from the full time stay at home mother of 3 children under the age of 6 to not even being able to care for my daily needs much less their's. In the 13 years since I have had my really aggressive CIDP, I often have felt like I was failing as a mom because of what I was not able to contribute both physically and simple just being in the home at all. (I spend 7 days inpatient at the hospital every month for the last 12 plus years- I am in a motorized wheelchair and on oxygen fulltime.) When I would hit my lowest, I kept coming back around in my head to my kids. They were/are the reason to keep holding on. I can promise you your children see you as the man and a great Daddy. When my oldest went to college last year, the magnitude of all the things he didn't get to do while he was growing up and all the things I missed being in the hospital or to sick to go to hit me. My CIDP also robbed my son of any college money from his parents (my medical insurance + bills takes every dime).I didn't thing anything could pull me out of that extreme low, but he did. He saw his childhood in a completely different light. I will never forget his view. He thanked me for fighting to stay alive. Fighting to come to things that were important to him and for fighting to get him what he needed even if I couldn't do it myself. He told me that meant more to him than if I had been healthy and came to everything. He went to college as a confident, well adjusted and happy kid. Your kids will see you as a strong man who loved them enough to keep fighting. I want to thank you for both your blog and for doing the transplant! (I can't do it because I have another neurological disease.) The things they learn from people like you may well benefit me later. THANK YOU! May God Bless you and your family.

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    1. No. Thank you for sharing your story and giving me some perspective. I too hope that from this study and others like it they will be able to help even more people. God bless you.

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  3. Where in Chicago?

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    1. Northwestern Memorial Hospital. Dr. Richard Burt is heading up the trial. Feel free to google him and you will see some of his interviews.

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