Point of view
Perspective is a word that's been used a lot between Rima and I since we started this transplant process. It's especially been a key vocabulary word this past week. Frame of mind or frame of reference in regards to living with CF. Rima dove into the CF social media world this past year more than ever. It's been an amazing tool of reference and connection for her. Being able to connect with CFers across the country and forge new friendships, comparing daily routines, diet tricks, questions, concerns, dreams, and fears. From an outsiders viewpoint, mine, this community is simply amazing. Seeing people from all over the world, various age groups, financial situations and beliefs round together to support one another in their fight.
To say this community is inspiring does not do it justice. "Normies" like myself might bitch about a packed train, or a long line at the grocery store, or a sold out show (white bread problems, as I like to call them). These beautiful human beings have something many people don't have in this world, perspective. They understand the fight for life. They understand that simple problems are not really problems. They understand and see the larger picture. It's hard not to let little things bother you sometimes. Even CFers get annoyed and frustrated at little normal issues, like long lines or take out taking too long. But, under that superficial momentary frustration lies years and years of struggles and battles. Fights that are not shared or made public. Complaints that never are expressed vocally. They understand what an actual problem is.
It's really changed the way I go about life, or try to at least. I'm only human, so of course I hate long lines, but in those moments where I'm about to complain about something so meaningless, I remind myself that I'm lucky to have these problems. I'm able to go out and live life without having other things stop me. I'm able to go to Target and run in and run out or plan to and then get stopped behind a lady with ten coupons and a trainee cashier who's so, so slow. Some people can't make it out due to their health or get to the destination but can't make it in. Knowing and understanding that your "problem" might be other people's "dreams", or "goals" in a way really breaks your thought process down. Especially the problems you bring upon yourself like planning a trip, getting frustrated about layover, or the hotel you like is booked. These are not problems or obstacles, they are just a part of your trip, your journey on a conscious decision you have made. We need to learn to enjoy these "issues" and treat them as detours or alternative routes that make you appreciate your ability and privilege to do what you want.
On a daily basis I see Rima on her iphone, typing or scrolling away. I'm not one of those people who get offended if she's on her phone not paying attention to me. I know she's probably chatting with another CFer about their day or a cf/transplant issue. Rima has cultivated and grown relationships with adults going through or already have gone through a double lung transplant. I follow their stories through Rima. It's incredible that each person who get's a transplant has a different journey. Not one is the same. Rima and I are very curious by nature so we like to hear about everyones' experience, the good and the bad. We know we can't expect the transplant to go a certain way. We can just prepare and be as ready as possible to tackle anything that comes our way. We have gotten over the timeline of thinking we will be back in Colorado by summer or after. When we get back is when we get back.
We follow CFers who after a year post transplant are now going through issues or rejection. During our transplant evaluation last April we were told to expect at least one to two types of rejection. To expect shit to hit the fan at some point. If shit's going to hit the fan, I'm going to be right next to Rima with a mop and a bucket. My sleeves are rolled up, hell I'll even use my shirt to wipe up the mess if needed. Perspective is everything. We know shit will hit the fan at some point, you can't avoid it forever. Knowing this makes us enjoy these days even more. It allows me to think before I react to dumb insignificant issues or "problems".
This past Sunday the weather was on our side, kind of. It was nice enough that staying indoors all day would be a crime. Rima and I drove about an hour north east to check out the town of Taylor Falls on the the Saint Croix river. We went with the plan that we were going to checkout a waterfall. Well, I obviously did not really do my research. We saw no such water fall, we found out after we left that there is a waterfall at a dam... Anyways it was a nice drive and a very pretty view of the river at the park we stopped at to find this "waterfall". On the way home we stopped at a winery along the road and had an impromptu wine tasting. We decided we need to go to another winery and soon!
On Thursday we finally got our act together and checked out the MIA, Minneapolis Institute of Art. It's pretty expansive so we only did about 3/4 of a floor. Good thing it's free because it will probably take us a couple more runs to see it all the way through. We're pretty stoked about this coming Saturday night. The nonprofit that we're renting our house from, With One Breath, is throwing their annual benefit to raise money and awareness for CF. Every year they dedicate the event to a person and this year they asked if they could dedicate it to Rima. We were very honored, and of course she said yes. We were asked to put together a little video about our story and how we ended up here in Minneapolis and at the house. After several takes and edits Rima and I produced a short, mostly picture video for the benefit. I can tell you for sure that when they play it, Rima and I will be beet red and probably hiding behind a table or in a restroom stall.