I truly feel that Craig, the true Craig, has been slowly but surely eroded over the years of my illness, which has been my whole life from birth to now and has been drastically accelerated over the last number of years.
Now the true Craig (Craig beyond his body) is so tired he is barely there and I want to leave peacefully before he has vanished.
Many feel that things happen for a reason. Some believe this as well as the fact that we are all given challenges in life to make us stronger.
Well, I have been broken all the way down, from my challenges in life.
If I could ask people to ponder one point, it would be to consider the possibility that even the camel, as the well-known saying goes, had a last straw that broke its back.
I am fully aware of the pain and the suffering as well as the poverty in the world. There is so much suffering and everyone on earth has their problems. Physical pain and the level of its severity is a self-perceived thing, we all experience physical pain differently, what one person can take is not what the other can stand.
I am not going to grin and smile and say that things are fine. I deeply admire those who have the ability to do that. I am now beyond the point of caring what other people outside of our wonderful home think. They will never understand what I have had to go through.
People look at me and I look normal. I ask them to look at my medical history and all that goes with it and the imminent arm surgery as well as the adhesion forecast, not to mention the unpredictability of NF1 and how my quality of life has changed.
Those who have known me all my life know how I have coped and, even now, with increasing health challenges, know how the real Craig has changed.
Craig is hardly Craig any more and I want to go in peace before the little bit of me that is left has gone.
I wish with every fibre of my being that I was stronger but reality cannot be changed. This is such a sad thing but if we don’t know how to accept reality then we live in denial as the famous Serenity Prayer goes: God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.
I have tried my best to change the things I am able to. And have fully accepted those that I cannot and, yes, I know the difference. It has got to a point where I have been forcefully put in a corner and bricked in and to top it off, the bricks are falling and caving in on me, bruising and destroying me.
Mom, angelic Mom, thank you for always telling the doctors that your little boy had a problem with headaches that you, Mom, were not imagining.
I feel no anger towards NF. It has just got to a point where enough is enough and I no longer want to be abused.
Mom, thank you for always believing me when I told you things about my body and how it feels. Like how I told you about my colon, months before it happened. I know you and Dad believe me about my arm. Even pulling a blanket that brushes over it causes pain and how now, at times, I feel it in my fingers.
Dad always said that I never complained without reason.
The big fibroma on my scalp at the front of my head causes throbbing pain at times; thank you, Mom, for believing this and that I am not trying to find things that are wrong or that I am constantly trying to scan my body.
If I could leave a thought or lesson behind it would be that it is okay to sometimes say, “I have had enough”, particularly when a person has had a long period of fighting, whether physical or emotional.
I also would like people to realise how stupid it is to sometimes say, “I know exactly how you feel.” We all have different pasts and emotional make-ups and live with different challenges. I know everybody has problems, but some are indeed greater and everybody deals with situations differently.
If I could ask one thing it would be that people should be slow to judge me. For them to try to imagine the possibility of a challenge that is not a constant thing, a challenge that is variable and one that has and is affecting many parts of my body.
Perhaps if I had a disability that was constant I would have been able to endure it more, but I cannot keep adapting.
I would also like people who have relatively normal bodies to be more consciously thankful for them. Some people want things like face lifts and enhancements when they are perfect. Yes, if it makes you happy then do it, but be thankful firstly for the blessing of a disease-free body.
Please tell people not to judge a man until you have walked in his shoes, as George [Irvine] put it. I feel that my challenges have not made me stronger, they have made me weaker and I want to go to sleep before more of who I am is taken.
Dad, please take Mom for a skinny decaf cappuccino once a week at Woolies. She loves their cappuccino’s taste and all that foam so much. Also, remind her to use her stamp card to add up to a cappuccino on the house. I used to love going weekly with Mom for one, but as NF further hammered me, we have been doing this as a take-away for the last two weeks.
The two of you will have to do whatever it takes for you to cope afterwards and whatever maybe, it’s okay and it’s your right; all I can say is thank you for listening to my heart
