The past few months have been some of the most difficult months I have experienced. It has been filled with the reality of Elton’s Pulmonary Hypertension hitting us hard and having to wrap our heads around our new normal. I won’t mention the things we’ve had to do/buy/let go/revisit to make our new normal work for us, but suffice to say that it has been tough. Relentless. Sad.
On Tuesday I had to fetch another assistive device for my 39 year old husband and after collecting it and driving back to work, I had one of those moments where your breath catches in your throat and the tears are threatening to spill. My first instinct was to stop the car and cry. Let it go, as Elsa in Frozen says, but I’ve been in a holding pattern for months now and I knew if I let it go on the side of that road, they would have to come scrape me up a few hours later and possibly book me in at some institution. I cannot afford to let it go now. I need to plan this letting go session carefully on a day when I’m home alone or something and let the dam(n) wall burst and hopefully recover by the time my roomies are back.
My internal voice can be quite harsh and she got me to snap out of it by reminding me that:
a) My husband is still alive
b) There are people so much worse off than we are
c) We have a great med aid that has given us everything we need (except the super-duper expensive (50k/month) meds that would considerably lengthen Elton’s life expectancy
d) My husband is still alive and capable of many things (R18) 😉
e) We have family and friends who are with us on this rare disease journey. Some of them are only starting to realize the enormity of the situation and some were there from the get-go.
A very good friend of ours, was so awesome at the start. When we were still trying to wrap our heads around it, she said: “Poensie, ek verstaan dit nog nie so lekker nie, maar dit klink verskriklik. Weet dat ek hier is vir jou en ITlaaitie. Wat ook al. Hoe ook al.”
And we love her eternally for that. That is all people on a rare disease journey actually need. People to say: This sounds and looks hectic from where I’m standing. I don’t fully understand it, please will you explain it to me until I get it and of course I’m here whenever, however you need me.
And in my off-guard moments, I do find myself railing against the universe/life/circumstances and asking the age old Why? Why me? Why him? Why us?
I saw a post somewhere the other day where a rare disease patient was saying Why not me? She went on to say there must be a purpose for all her suffering, etc but sorry, I’m not in that Zen place yet.
So until I can have my dam wall breaking moment, I guess I will be very unZen and rail and gnash my teeth and strike out and do whatever it takes to get me through the day. Thanks for listening…