Five Years Ago, Today, My Grandpa Leo Died

It doesn't feel like he died five years ago, today. It doesn't feel like it has been that long. It seems like just yesterday, he was getting his lung transplant. It seems like just yesterday, I had called him for good luck wishes for my High School Spring Play performance. It seems like just yesterday, I felt that annoying yet comforting poke in the shoulder he always gave me. I could go on and on about how it feels like he was just here with us because I still think of him on a daily basis.

I missed him at my last five birthdays, at the last five years full of holidays and celebrations. I missed him at my High School Graduation. And next month, I will miss him at my College Graduation. I will miss him. I do miss him.

That is why I write. That is why I call my grandma Joyce. Because I not only miss him but I have to check in on her. She is all alone, in her big empty house. I feel guilty when I come home to visit. I feel guilty when I think about how alone she is, while I live my own separate life in St. Paul. I always feel guilty when I can't be there for someone I love.

Guilt isn't the only emotion that I have felt since my grandfathers death. I have felt a major loss. I have felt anger, sadness, loneliness, confusion, but also love, in knowing that he is always with me.

I will never forget the day he died. I will never forget the days leading up to his wake and funeral. I had to prepare his eulogy. Not only because my family asked me but I wanted to. That is when I started to write to cope with my emotions. I was 15-years-old when he died. I grabbed a pencil and a notebook and went outside of my grandparents house and sat under an enormous and beautiful tree and I sat and wrote. I cried. I laughed. I felt better. I then typed up his eulogy, edited and revised it. Then a couple of days later, I gave my grandfathers eulogy in front of all the people that loved him. I front of hundreds and hundreds of people in a packed church. I didn't shed on tear when I said those words of love. I would do it again and I would say more.

As I look back at my eulogy, I would have said a great deal more. I would have had more time without him and more time to truly think of things to say. He helped me grow up. He was my grandfather. I am still very lucky to have three living grandparents to continue to help me grow up some more and help me when I need it.

But my life has never been the same since he died five years ago, today. And the lives of my family members have not been the same either.

Two Year Diaversary

Today, April 6th, marks my two year diaversary (diagnosis anniversary) of Postural Orthostatic Tachycardia Syndrome. There are many emotions that come to me; anger, denial, acceptance, sadness, depression, relief, etc. I am experiencing a storm of emotions.

Since I have been diagnosed with POTs, I have been to the emergency room six times because of flare-ups. I have passed out countless times, injured myself countless times, missed class and meetings countless times, had to cancel plans countless times, etc. You get the picture.

A lot of you have even been on the other end of those times. I have either cancelled plans on you, missed a class that we took together, had to cancel a meeting with you, or maybe you were lucky enough to see me during the middle of a flare-up or have taken me to the emergency room, or were at least able to visit me at the emergency room.

Two years doesn't seem that long ago, but to me, it feels like an eternity. I have gained and lost a lot of friends, have gotten into arguments with friends and family, have had many laughs, and many cries. I've experienced many different places, taken and learned a lot from various classes, have had way too many ups and downs to even count, mostly downs. A lot can happen in two years, a lot can happen in one.

On this day, I always reflect on how my life has been completely changed because of not this diagnosis but this illness. I have been living with this illness for probably a good six years. During this reflective time, I realize how glad and relieved I am that I don't have diaversary days for my other diagnoses; depression and PTSD. I don't think those days would be good for me.

I think out all of the shitty things that have happened to me, this is the one day that I am glad that I actually have an anniversary for. Other then my grandfathers death, but that shitty thing happened to our entire family. And there is no escaping death of a family member or friend, or the anniversary of it. So, those days will just keep adding up. Also, my grandpa Leo's death happened on April 29th. I have two very difficult anniversaries in April.

I am glad I have an anniversary for my diagnosis of POTs because of the reflection that I have been able to do these last two years. Reflection is good. Self-awareness is good. Knowing what illness I live with is good. Being able to get treatment for my illness is good. Good things have happened since my diagnosis. But also a lot of bad things. However, in a lot of ways, the good things "out weigh" the bad things.

I don't know who I would be or where I would be, if I had never been diagnosed. What if I were living a life, not knowing what kind of illness I was living with? Do you know how scary and confusing that would be for me, my friends and my family? Oh, wait, I have lived that life.

Passing out and experiencing outrageous symptoms on a daily basis, isn't so weird when you have a diagnosis. Do you know how weird it would be if I didn't know why these things were happening to me? Yes, I do. I was undiagnosed for like 4 or 5 years. It was awful not knowing what was wrong with me, or if there even was anything wrong. I felt crazy. The doctors made me feel crazy. That is one of the reasons I hate going to see doctors or most professionals. They are usually assholes that don't care about your feelings. It is a miracle if I have a good experience with one. As you probably have read before on my blog, I have had bad experiences with many doctors.

Anyway, in a lot of ways, I can't believe it has been two years since I had to have that awful Tilt Table Test done on me. TWO YEARS! ONE TEST! ONE DIAGNOSIS! CRAZY! FINALLY! That is my relief speaking, by the way. The relief of having a name, having a treatment plan, having friends with the same illness and not feeling alone anymore. What relief! 

And the support! Woman, have I gotten so much support from so many people. I know now who I can and cannot talk to about certain things because of this little thing called trust. I have learned who I can trust. I have learned who I can turn to on my bad days. I never truly knew how loved I was and am, until I was diagnosed with an illness. NEVER! TRULY!

Lately, I have been having to remind myself about these individuals in my life that bring me up instead of down. Because I have been down and I don't need those individuals that bring me down in my life. That is, unless, they are forced into my life and I can't get away from them or the things they have done to me. Then I have to put up with them. But then I remember that I have other people in my life to bring me up. I concentrate on them. I know, that a lot of you know who you are. At least, I hope you do!

Overall, I believe. No, I know that I have grown as an individual greatly. I have grown a lot from this illness and from the diagnosis. I have done a lot. I have become more of an illness and disability advocate for myself and others. I started the ALIVE (Advocating for Life, Illness Visibility and Education) group on my college campus. I have learned from others who live with illnesses. I have learned more about who I am as an individual, as well.

Overall, the last two years have been good. That is, in the sense of me growing as a person. Because a lot of shitty things have happened, even not related to my POTs. But I guess I still grew from them too.