"You Want Answers? I Want the Truth! You Can't Handle the Truth!" (by Lisa Lane McCarty)
"You make this look so easy" ~Auntie Janice
So life is a matter of perspective, right? What I am doing to save Courtney's life is easy...in comparison to what she is going through just to stay alive. But, I'm tired. Mentally, emotionally, physically. I'm anxious and terrified all the time about the near future as we finish up the pre-transplant testing and prepare for listing. I have nightmares almost every night. And they are not what you'd think. They are not nightmares about transplant or Courtney dying. But they are sometimes so intense that I have to will myself to wake up so my breathing can return to normal and my heart can stop racing. This is my stress manifesting itself because it has to leak out somewhere, right?
I'm hyper vigilant constantly because I am so used to phone calls out of the blue that Courtney is at the ER or being transferred to Dartmouth-Hitchcock. Cystic fibrosis never, ever gives you a break. It hibernates for bits of time and then roars it's ugly head whenever it wants: "Hi, I'm still here. I know you were starting to feel relaxed because Courtney was feeling decent lately but I decided to give her a mysterious pain in her lower left lung that will force her to go to the ER today". Because that just happened.
Here's a glimpse of my last few weeks:
- Courtney needs dental clearance to be listed. NH dentist said she has 16 cavities to be filled and 4 wisdom teeth to be pulled. Courtney does not have dental insurance. Cost? $3,400 for the cavities; god knows how much for the wisdom teeth.
- Take Courtney to my dentist a week later for a 2nd opinion because this money will be coming out of her Transplant fund...and we need that money for...well, her transplant! My dentist comes back with 16 cavities to be filled at the cost of $3,100 and only one wisdom tooth to be pulled. Better but there goes a chunk of our fund money. This is a HUGE problem for us. Now we have to make multiple appointments to the dentist for the work and this needs to be done ASAP or they won't list her. And he's in Pepperell, so she'll need rides to all of these appointments.
- Take Courtney to get her hair done. Come out of the salon, my car has been smashed to bits while parked. This now creates more stress and now I am without a car.
- The next day, Courtney texts to tell me she has an agonizing pain in her left lung and needs to go to the ER. Her boyfriend gets her to the ER, they tell her she has a lung collapse. Turns out it's not a collapse but they don't know what it is so they need to transfer her to her CF hospital (Dartmouth) where they know how to care for her. She's transferred via ambulance the next day. She's still there and they suspect an infection in the pleural lining of her lungs. Well, that's a new one.
- Courtney's Medicare is about to be cancelled because she out of the blue got a bill for $4,400 she mysteriously owes? She also had her SSI cut for no reason and they told her she owes them $874 because they gave her a one-time over payment in that amount recently - which she never got?! That was an hour long conversation between me and a caseworker at Social Security the other day pleading her case and in a panic that they are about to shut down Courtney's health insurance. RIGHT BEFORE TRANSPLANT! We now have forms to fill out, affidavits to file, social services to call for assistance and money to try to get back (the $874) which was given to the wrong person, not Courtney!
- We have a wrap-up appointment at MGH on Feb. 13th. This is supposed to be our final group of appointments and we assume the listing process will then begin. That's if we can get this dental work done which we can't even begin until she's released from the hospital - and we have no idea how long she will be admitted.
- Then, we have an endocrine consult the very next day at MGH on Feb. 14th - because you take appointments when they're offered or else. So two days in a row of commuting from Leominster to Manchester to Boston. Good times.
I remember last winter when Courtney almost died and was in the hospital, somebody did something so mean and so awful to me that I completely had what I would describe as a full-on, complete, hysterical breakdown. Ask Jim. He was sitting right next to me. I texted Courtney and told her that I couldn't do it anymore. That I was giving up. I actually did that. Do you see why I am calling this a full-on mental break? For a nano-second, I considered giving up on Courtney. THAT is how hard this gets sometimes. But, of course that thinking lasted all of 2 minutes and I came to my senses. Poor Courtney was so supportive but I knew she was afraid I meant it. I will NEVER EVER give up on Courtney. Getting her new lungs and extending her life so she can stay on this planet a bit longer with all of us - including her son - is my mission. I will not be deterred and I find it an honor to be honest.So maybe this is just a little pity party I'm having today. I don't know. I never want the focus to be off of Courtney. Maybe I try to make this look easy so people don't focus on me. But I'm lying to everyone. Being a caregiver of someone with a chronic illness - especially when you're "their person" - is so hard sometimes. Because I have a life, too. I'm a wife, I'm a step-mother, I'm a daughter, I'm a friend and I'm an imperfect person working on my imperfections. I'm also an Academy Director of an innovative police training program that has no equal in this country. I have the weight and primary responsibility of this program squarely on my shoulders. But what I know is that I have found the balance to all of this and I will continue to find the balance. And I will forgive myself on the days that I feel guilty that I'm not doing enough. And I will remind myself that it's not selfish to take time for myself and to put myself first sometimes.
Because...can you handle the truth? This isn't as easy as it looks. Not by a long shot. But it is so worth it.
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