| Not long back, my adult son Jeff and I took a trip | | | | witness the magnificent views of this beautiful but |
| to a very remote part of Western Australia. It's | | | | harsh country. Getting down is a different story, |
| in excess of 1000 miles from home, in | | | | best left for now. |
| semi-desert terrain, very remote, very brutal, but | | | | So, what is the intention of this story? I have |
| at the same time very beautiful too. So what's | | | | found out by researching the net that many |
| this got to do with myelofibrosis I hear you ask? | | | | myelofibrosis sufferers just give up. For one |
| Well, the story itself, not very much. But it does | | | | reason or another, they give up. They discover |
| have a purpose, so keep reading. | | | | themselves with anemia the result of a disorder |
| After something like 18 hours driving, the last few | | | | that currently has no cure. They run out of |
| hours off road, we reached our destination, a | | | | breath easily, they feel like crap much of the |
| place Jeff could remember the name of but he | | | | time, they merely don't have the motivation any |
| couldn't remember anything about it. He had been | | | | longer to do anything more than watch the soaps |
| there with me about 25 years ago when he was | | | | on afternoon TV. So they give up on life. And like |
| quite little. The place is called Bowls Gorge, and it | | | | with me on the side of a rock face, it could be |
| is a succession of circular features carved out of | | | | more hazardous for them to give up than |
| the rock by nature as water cut it's way through | | | | continue on. |
| a small range of hills around 300 feet high. The | | | | Why? Well, they will never experience the life |
| only way to see these features is to climb up the | | | | they were searching for. They may well lose |
| almost sheer walls of the valley about 200 feet | | | | home or family since they didn't exhibit the |
| so as to look down on them. But to start with is | | | | determination to continue on getting something |
| a climb up the stream bed (dry at the time of | | | | out of life. There were many times as I climbed |
| our visit) to get to the bottom of the valley, | | | | the side of that valley, my heart demanding to |
| almost a mile from our camp location and about | | | | break out from my chest and me gasping for |
| 100 feet above. | | | | sufficient breath to stand up, that I said to myself |
| Now, to nearly all people, this is quite a mild | | | | "I will make it to the top, I don't care how long it |
| challenge, but to me it was quite a bit more. I | | | | takes!" I was so resolute to make it |
| didn't know if I could do the initial part of the climb | | | | (stubbornness my family called it) that I did get to |
| up the river valley, let alone climb its precipice like | | | | the top. |
| wall. You see, I have a bone marrow disorder | | | | I really felt I had achieved something, something |
| which requires me to receive a blood transfusion | | | | meaningful for me, since I was so determined |
| about every 4 weeks. By the end of the four | | | | that I was going to do it. I have the same |
| weeks, my hemoglobin gets too low for me to | | | | determination to get to the best out of what |
| even think about attempting this and even a | | | | remains of my life while I have some capability to |
| week after the transfusion there was a little | | | | do so. Not that I don't have my down days and |
| doubt if I was too anemic to do it. In addition, we | | | | sometimes wonder what the point of pushing |
| were both hauling water and camera equipment in | | | | myself doing these things is, but I possess the |
| backpacks. | | | | determination to go on. |
| We made it up the river bed and into the valley | | | | I've passed the moment on the climb up the |
| OK, and after looking around and taking various | | | | valley where I had to decide to go on or turn |
| pictures, I determined I was able to go on. The | | | | back. And like at that time, my determination has |
| climb was not too challenging but it was quite | | | | won out. I will do as much as I can. I've even |
| hazardous due to the loose stones. I had to break | | | | taken on a life coach to help me, to keep me |
| often to get my breath back, an opportunity to | | | | accountable to myself. If you're finding it |
| take additional photos of the "bowls". It got to a | | | | challenging to continue on while suffering the |
| situation where I was really quite exhausted, and | | | | symptoms of this horrible disorder, turn up your |
| so sitting on a rock half way up the face of a | | | | determination, don't turn back, don't fall off the |
| cliff, I had to decide whether to try to carry on | | | | rock face. |
| or go back down. Jeff and I had a look at both | | | | There is so much to experience out there, you |
| options and on the whole, it was going to be | | | | just have to discover the way to find the energy |
| harder and more hazardous to go back down the | | | | to do it. It can be done. It doesn't have to be |
| way we had come, so the plan was to go on up. | | | | climbing a mountain in the wilderness - I'm just a |
| Now this may seem to be a surprising choice, as | | | | bit mad. Take yourself out of isolation and start |
| we had to get down sometime. We had come up | | | | asking new questions. And have a good look inside |
| the way we had because we wanted to | | | | yourself to see if the missing bit to the puzzle is |
| appreciate the bowls, but we could go down at a | | | | in there. Truly remember, the only way you will |
| place that was easier. So after many additional | | | | fail yourself, is if you give up. |
| rest stops we reached the top of the range to | | | | |