Remember when you were a child and opening up a present, whether it be Christmas or your birthday, and being so super excited about what was underneath that wrapping paper or in the bag buried in tissue paper? You were either the careful, meticulous and slow present opener or the crazed, energy filled and fast one. I was a slow and calm present opener for I wanted to absorb the experience and get myself really amped up. When you hit a certain age, you asked for an electric toy. A toy that ran on batteries. A remote control car, a Barbie toy that lit up maybe, a game or maybe something completely different.
Sitting in the living room floor on Christmas morning finally getting past the socks you just opened (older now I realized those socks were much-needed, just admit it too) and finally unwrapping the biggest present, saving it for last. You rip it open or slowly tear the paper off of it and see the present and scream for joy which lead to begging your mom or dad if you could open the box NOW! Like right now! You even pulled a “pleeeassseee pretty pleaseeee!!!!” Getting the okay you desperately tried to get the toy out of the package and realize with bigger toys there comes tricky twist ties, tape and sometimes even staples and mini zip ties. You would groan and your little hands would attempt to administer all of those things yourself. My engineer dad would always have a scissor handy Christmas morning and jump to help my sister, brother and I. Wiggling in excitement for him to finish all the tough zip ties, I would be handed the toy back sliding the it out of the box and pressing the buttons only realizing then that it required batteries. Not only batteries but a certain screwdriver but wait what kind of batteries and where DID that manual go?! Groaning even louder this time and looking up at my parents to help me find batteries and a screwdriver and to please help me. Then begins the journey of rummaging through the junk drawer for batteries and the garage for that certain screw driver. Either a hit or miss with that type of thing. Most of the time my parents would somehow find all of those batteries and unscrew the back of the toy, fit those batteries in correctly and screwing it back on all while I watch over their shoulder. Fascinated with how these super human people with invisible capes managed to make my toy work. As soon as my dad would tighten the last twirl of the screw in and I’d see the toy light up and hear it make a noise I would jump for joy and try to reach to get it. Playing with it for not nearly long enough Christmas morning until the kids were called into the kitchen to eat breakfast and get dressed for church. Realizing it now, I hope that I at least thanked them for doing this every birthday and Christmas. For three kids too.
I think back to all of this and it sounds so similar to what goes on being an adult. Just on a much much more difficult level. Since I started to have medical issue after the other and I look back now I see the resemblance of batteries not included. Remember seeing that in the tiniest of print on that toy? “Batteries not included” was always written on the very bottom or in teeny tiny letters. When I went into congestive heart failure in August 2008 which lead to being on the transplant list, I didn’t fully comprehend what was happening. I knew I when they told me I needed a new heart and that was surgery. I was aware when they told me all of the details entailing it. Such as it could take a long while to get “the call” for a matching heart. I knew all of the medical details
(Click for detail info) and I learned and my mom learned as well. We were like sponges, absorbing all the information we could get so we could be the best prepared for when that day the doctor would walk in and tell me they had a match. It all went smooth, they surgery and recovery. It couldn’t have gone more smoothly.
Mentally I was okay as I performed the mandatory amount of recovery days after the heart transplant and physically deal with the pain and removal of the dozens of tubes and IV’s. I was okay. I was okay even for excessively bumpy city ride home from Morgan Stanley Children’s Hospital. I was okay. I was okay when I got home and conquered the step into the house that seemed so much higher than the last time. The pain did not really matter because I was finally home. I pet my cat and I walked around a bit, stiff and sore from the long ride home. I was even okay going up the stairs. Slowly but surely I made it up fine. I was overly okay taking my first real shower. Ecstatic that it wasn’t going to be a sponge bath. When I started to take off my clothes I was not okay. I dropped my shirt on the ground and now that my pants and underwear were already off since I stripped them first, I was fully naked. I stood there looking over every inch and moving parts of my chubby steroid flabs over so I could see my body in its entirety. I almost screamed as I looked at my body in the bathroom mirror. Just minutes before I was thrilled to be getting into the shower that I missed for months and took for granted. I was disgustingly shocked at the view of my body in the already unflattering bathroom lighting. I hadn’t realized it at first but I started to form tears. I only noticed because my vision was becoming obscured. Although I was appalled at the bruises all over my stomach, chest and even parts of my legs, I hadn’t realized the magnitude of the physical damage to my body but I wasn’t crying because of that. It would all go away, the scabs too. What I was afraid of not disappearing was my grief. The grief that I so surprisingly developed in those few minutes of scanning my body. The grief I had for the stranger whose heart was now in my chest. I found myself crying for them. Crying for the loss but now for the current understanding that I was in fact, waiting for someone to die. And then the anger came. The anger that I had not recognized it before. All those months in the hospital waiting and not for one split second realizing that I obviously needed a dead persons organ.
Batteries not included. The batteries I needed to cope with all the emotions with getting a heart transplant was not included. Not in those discharge papers, not in the instructions sent home or the patient handbook I was given. I couldn’t understand what I was feeling. Why had the doctors and nurses not prepared me for this much pain. Mental pain. I wanted to go back, I changed my mind. I didn’t want this anymore. It was too much. I needed the certain screwdriver and those batteries from the junk drawer to fix my hurt. I wanted to back to those simple days of making pictures with chalk in the driveway and riding bikes till my mom called us kids in to wash our hands for dinner. To see my dads car pull up and see who wold give him a hug first. To those sleep-overs with my cousins and the huge pot full of perfect Kraft mac n cheese my aunt would make for all of us and then in the morning would be any breakfast of your choice. I wanted it all back. I still do. I still crave for those summer days in the sprinkler and getting grass stuck to our legs and mud in between our toes. The only worry in the world was getting a scraped knee or elbow from falling on my bike but getting it quickly fixed by mom with a cartoon band-aid and a kiss to make it better. Not having to fight for anything except the best flavored popsicle or the prettiest outfit for Barbie.
Not having to fight the most fist clenching, sweaty armpit, teeth gritting pain. I need those batteries so I can figure out how to cope. I don’t know if I will ever find a way to deal with the baggage that comes with what life brings me. Some days are good and some days aren’t. The feelings consume me as I unburden my past health events. But at the same time I wouldn’t trade it for anything. With pain, I become stronger. I’m not even sure if this theory makes any sense at all, if what I’m feeling makes any sense. I didn’t plan on writing this much and I apologize if it seems excessive. As I post, I am still figuring things out. How to deal with my past, how to revisit the memories good and not so fun. To push myself to get up in the morning and push through whatever I have to deal with that day, physically and mentally. To find joy in this fight. To love myself and to be proud of how far I’ve come. I’m not there and I don’t know how long it will take, but I’d like you all to be in it with me or just listen. To hear me share my stories, rants, complaints, joys, praises, fun encounters etc.
I can share one quick awesome super cool story. And then I might be done. Other posts will be shorter I promise. Probably not… My boyfriend Ken’s mother is friends with a woman who volunteers at a horse rescue shelter and she told me about it and I was hesitant because I used to ride years ago and stopped due to health stuff and especially the hip replacement. In the back of my head I always would like to start again and I still plan on doing so. Ken and I went to this horse shelter a few weeks ago and the first time we just looked around and I talked to the horses and some of the people there. Learned some of the horse’s stories and they were pretty tear jerking. The horses had been through so much and they all had they’re unique story. The second time we went we had been given some horse treats and were told we could pet them if they came up to us. Ken seemed so excited for me but I was still hesitant because it was a huge deal to pet a horse again. I hadn’t in more than ten years. So it was emotion packed but exciting no doubt. It was healing to even just pet them and talk to them. I had such a passion for riding and horses in general. To be near them again was so special and they all had they’re story and some were still recovering. But this place is pretty cool if you know any horse lovers that would want to pet and feed some beautiful horses. Even for non horse lovers too.
Until next time….
Thanks for reading,
***When I will post: probably once a week, maybe more so stay tuned. If you have any ideas, tips, suggestions please let me know!
Some posts may not be full of intense feelings, they may be stories or things that I do. The next one will probably be along those lines. Thanks again for tuning in I still have no idea what I’m doing 🙂
I know I haven’t posted since the first introduction blog post but instead of me giving you a bunch of excuses as to why I haven’t and lie to you, I am going to tell you the truth. I am scared. I’m not scared to tell you all but what I’m scared of is having to face some of my memories and feelings having to do with those memories. I have subconsciously avoided dealing with some emotions and even just the memories themselves lately. I’m talking about the most traumatic, fist clenching painful memories as well as the less painful ones or the emotional memories. The physically painful events and the emotional events. And you guessed it, all having to do with my health. I do have a life other than my health and dealing with that, but that always came naturally. It was my normal, it was my family’s normal as well. I have been forcing myself to face some of these events and go through them in my head but I just end up either getting upset and cry or get angry and cry. I’m not sure if it helps but maybe it does..thoughts? Does facing traumatic memories and events in the past help or do more damage? I know I have to do it anyway in order to keep this blog up and to write my book but what do you think?
For the actual legit reasons having to do with the delay of me posting is because I got some sort of nasty cold. I’m still getting over it but thank God I’m not coughing nearly as much but mostly just tired. I have been going to the gym since I completed my hip replacement physical therapy and I got a good handle of what exercises I should and shouldn’t be doing (yet) so I gathered up the courage to go to the gym in the clubhouse near my house. I made some (older) friends there since they seem to always wonder what the 12-year-old looking girl with the cane is doing at the gym. I’m always happy to tell my story but sometimes I just don’t feel like talking. I learned that people’s curiosity will actually help spread my inspiring story because I need to do that. I just didn’t realize that’s another way.
Another thing that has been taking up my time as well as my mom’s is insurance. Now everybody groan with me I know a lot of you know the struggles with that. I have a need for a special type of physical therapy (I’m not sure I want to share what type as of yet) and my insurance doesn’t cover it so it will be a big chunk of money for the co-pays I just don’t feel I want to pay for. So my mom is helping me fight the insurance for it. And when I say helping me I mean she calls and I stay in the room and listen because she is a pro at that certain talk. It may as well be another language to me. Also trying to sort out a few other medical stuff. So that means lots of phone calls and phone tag. This will happen often…me going off on things and rabbit trailing. Bare with me.