My blog has always been about my life with arthritis and fibromyalgia. My advocacy work has been about RA, FMS, and people who need support. My brother’s illness has forced me to look at the goodness of people more than I was able to in the past. It has also taught me how to lean on others for support and that I don’t have to be the strongest person in the room. My brother has received so much support and so many prayers from family, friends, various family contacts, my fellow bloggers, people I know through Arthritis Connect and Fibromyalgia Connect, co-workers, fellow RA and Fibro suffers through Facebook, people who I have been able to connect with about his rare cancer, and even complete strangers. It reminds that there is so much good in the world. It also tells me that there is hope despite the numbness my family feels, despite our pain and hurt, and despite my brother’s struggle towards remission.
In the last few weeks, we have learned what it means to be a family. We have learned who are true friends are, and we have learned that there is so much good in this world. When my brother’s diagnosis came crashing down on us, we were helpless and hopeless. I did not sleep for days especially after the surgery. I spent most of Thanksgiving through the following Monday feeling like God had let our family down. Meanwhile, my brother was on a ventilator fighting for his life. There were so many prayers made for him and the day my brother came off the ventilator, I realized the power of prayer. My siblings and I were raised in the Muslim faith but we were never very religious. I have always felt that what there are many differences in religions but what binds us all together is the same God. That same God unites us all in times of need. I thank every single person of every faith who prayed for my brother’s recovery because that same God that we all prayed to is the one that brought my brother back to us.
My brother is still having breathing difficulties and he still has not gotten his voice back. He is also still on a feeding tube because he has not yet shown the doctors any colon activity but his surgery is still fresh and he still has a lot of work ahead of him before he gets out of ICU. The ICU nurses – God bless every one of them- put our hearts at ease everyday. My brother’s cancer is a pretty rare one and even a hospital that was ranked a world leader in cancer care is baffled. Leave it to my brother to baffle a hospital that has successfully treated hundreds of other cancers – he can joke about that when he is in remission. Yesterday, as he was struggling to explain something to the nurse because of his voice issues, I told the nurse, “wait until next week when he has his voice back and he is back to pissing a lot of people off,” and I welcome that day because a month ago, that would have been really annoying but now, it is something that gives us hope. These are small victories but they are also large pockets of hope.
As a family we understand that my brother’s care needs to be transferred to someone who specializes in the disease and I promised him that would happen. To the hospital my brother is just a number, but to me, he is MY BROTHER, and I won’t let anyone treat him like a number. I will find a way to make things happen and I will work really hard to get my brother into remission but the one thing I refuse to do is give up hope. While I am angry about the hospital for their lack of knowledge in my brother’s care and for not seeking assistance from experts in the field, I think that I am angrier that they basically told us to abandon hope. Hope is all we have right now and that is all he is hanging on to right now. Because of that, I refuse to give up hope. I know that despite the numbness, the pain, and the hurt that we are feeling, there is hope and sometimes, when we are in the line of fire, we forget that it exists but it is always there – right under our noses.