Sunshine Triumphs Rain

The entire world is starving for kindness right now.  Be good to each other today.  Participate in random acts of kindness to spread joy.  Pay for someone’s meal. Load money on a grocery store card. I would give anything to know the solution. Make it a point to start a conversation with a person that you might not wouldn’t normally have a conversation with. Get to know them and their story and listen

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As a culture, we have so much to learn from one another’s experiences and backgrounds. We are all a product of our own individual upbringing. And that is what makes us all so diverse and wonderful and unique. As a community with so much suffering simply opening up and learning someone’s story is a great place to start. Listen and empathize with what you hear and the world would be such a better place. 

I can tell you first hand, as someone who has faced endless trauma, its times like this where the rug feels like it has been yanked from under you over and over. These are the times when you experience the most growth. All these feelings of uncertainty leads to a new stronger more dynamic version of yourself. It’s so hard to see that right now because we are all knee deep in pain but know that this is only temporary and the person that you will reemerge as it going to be stronger than titanium.

This constant feeling of being uncomfortable and endless “WTF’s” is strangely necessary for growth. Life can often seem like you are constantly treading water, just trying to keep your head out and I just want to say how proud of you I am you’re still treading. I hope that we all take the weight of what’s going on right now and let it guide us onto more empathetic people. I’ve been having tremendous trouble trying to wrap my head around the why’s of why is this happening for some time now. I can say the only thing that I can come up with is that the universe is trying to teach us a lesson of perseverance or empathy of some sort. It’s so much to try to understand.
 
I have been talking with friends right now about how for my entire life feels similarly heavy to the pain we are all feeling during Covid. Being a caretaker for 20 years, being at risk for HD and quite frankly navigating early life completely alone without guidance from any adult. Always having so many unknowns always going on. And just when you think it can’t get any worse boom, you’re wrong. Or just feeling like the entire universe was working against me. With the deepness of this current pain I can wholeheartedly tell you it will get better. This is not permanent. I know with my entire soul that if I can dig myself out of the trenches that so can you, I just need you to believe in yourself even when it seems
impossible.

Sitting here with the stillness since we aren’t able to go anywhere forces us to take a deeper look at ourselves because we are always so used to rushing around but being still with yourself unveils so many repressed feelings a lot of the time we have never dealt with. To those of you going through something like this my heart goes out to you and I can absolutely relate. Allow yourself to feel it all. Maybe this is a part of the universes plan to deal with your inner repressed feelings and get to know yourself on a deeper level.

I am well aware dealing with trauma has given me this enormous heart. I’ve said for a very long time I don’t think kind hearted people just happen, we are all a product of our upbringing and some of us have been brought in privilege and maybe this is your time to grow. Take this as an opportunity to gain perspective you would have never been able to see before this.

None of us feel like a pillar of strength right now and that’s okay. Allow yourself to feel what’s going on
around us.

I went to the nursing home yesterday and was turned away because of Coronavirus. They are locking all doors for the safety of people there. Was my first reaction sad I couldn’t see my dad?  Sure, but I immediately checked myself. I realized my own selfish want to see my dad was tiny in comparison to keeping the people in the nursing home safe because who knew if I was a carrier since you can have it for over a week and not show symptoms. Looking back at the situation I’m so glad they aren’t letting anyone in to protect those people there.

With the current circumstances the only hope for people who have compromised systems is your participation in some events being canceled. Doing everything in our power to help stop spreading this is single handedly the most crucial part of what’s going on. We are going to have to get over our selfishness and more times than not people don’t give a shit about each other or how their actions may affect others.  We are talking about people dying here and doing whatever necessary to stop it.

It’s fucking terrifying for people like my dad who, who didn’t ask to be sick or compromised ever. Do you think anyone secretly wishes for cancer, absolutely not! In fact, he hasn’t been able to talk for 6 years, but if he could talk he would tell you he hates the disease that robbed his entire life and 30 years he didn’t get to have with his family. He’s never been to a concert with us, never been on an airplane, never got to live any of life

So, with the current health scare relying on humanity to just do what’s best for people like him is beyond terrifying because we all know humanity, for the most part, doesn’t give a shit about anything but themselves. Every single selfish person is going to be the reason people die because “they won’t get sick” but spread the sickness because they are not taking these warnings seriously.  Maybe my dad included.

Believe me when I say I’m always rainbows and sunshine and that’s a fact but this is terrifying for those of us with possibilities of losing family. Maybe he will be fine but I want to do everything in my power to protect him as I always have. So you have to cancel your vacation and people are mad about it. I do understand, believe me I love traveling but that comes from a super privileged perspective.   Do you even know how lucky you are to be able to afford to travel?  Most at risk people can’t afford healthcare to begin with and all you’re worried about is getting a tan vacation.

I suppose this is written to give some insight to some people who just plain have it good and don’t understand why this is being taken so seriously.  Do I think you should cancel your entire life? Heck no, but try to be mindful of others. This is also not written to anyone specifically, just my inner “too kind and empathetic for this world” heart’s feelings!

I know the world turns a blind eye to things that doesn’t affect them. It’s what they are best at. As a caretaker for 20+ years for somebody that has a disease almost nobody cares about I can sadly confirm that. Clearly, I am not saying I don’t have an incredible support system now but it wasn’t always that way for me.

Maybe this entire thing is only a possibility and maybe we are taking it what you think is extreme, that’s your opinion.  Do I think some of the media is portraying this way out of context, absolutely. But my opinion is to do what I can to help save the lives of those who are at risk. I mean please let me be wrong, I am hoping that this is contained immediately and we can all go about our regular life. Please, please, please let me be wrong!

Until we really know what we are dealing with let’s just take the precautions seriously.

There has been a bit of a hiatus from the blog because I’ve been dealing with some unplanned chaos with my dad.  I will go into more detail in this post, but the long story short, he was kicked out of his nursing home with nowhere else to go.  For those of you who are familiar with Huntington’s disease, you understand that getting someone with Huntington’s disease admitted into a nursing home is no easy task. For those of you who are not familiar with the process, let me do my best to paint the picture.  Unfortunately, most nursing homes in the United States are for-profit organizations, which give them the right to deny an individual based solely on their diagnosis.  As unfair as it is, they are able to do it and let me tell you, they absolutely do use this power to veto patients.  A few years ago, when we realized that my dad would need to be placed into a nursing home, I began making calls. I was woefully unaware of the seemingly insurmountable task that this was going to be, something that should have been so simple, to find my dad a safe place to live. Yet, it took two years of me calling facilities nonstop before one FINALLY said yes. The fact that he had HD made it hard to find a place that would accept him, but being a male Medicaid HD patient made it nearly impossible.

Fast forward to our current situation, 3 years of him living in the one nursing home that finally said ‘Yes’.  They have never made it easy for him or us. Every couple of months, I would receive a call from the nursing home that something had happened, my dad was being aggressive, and they sent him to the ER to have him checked for any underlying infections that could be causing this behavior.  They would tell me that it wasn’t like him to be aggressive and they wanted to make sure that everything was okay.  We would rush to the emergency room to wait, usually not leaving until 3am.  Every time we arrived, the doctor treating my dad would pull me aside, confused by the nursing homes decision to send him in for aggression because he had been smiling since he was brought in.

Finally, after arriving for our 3rd ER trip, the doctor pulled me aside, told me he recognized me and knew our situation. He was very upset that the nursing home continued to send my dad to the ER without reason and he told me that he would do everything in his power to get us back to the home as soon as possible.  A few hours later, after his blood work came back clear, the psych doctor came to visit us. She was as baffled, if not more, as to why we were there, again because my dad had been smiling the entire time he was there without a single incident. She told me that she would be contacting the nursing home and that she would do everything in her power to get him back into the home as well.

She was true to her word and was able to get him back into the home 3 more times, but the 4th  time the nursing home refused his return because ‘they could no longer take care of him’.  These words, long before they were actually said, were the words that kept me up at night. For so long, I knew there were coming. The fear and anticipation of not if, but when was ever present and when I finally heard them, I felt as if my world had come crashing down. The helplessness and fear of my dad losing the only home that would take him is something I hope no one ever has to endure.

Even though I knew this day was inevitable, there was no way I could have ever been truly prepared.  I knew that the best course of action was to become familiar with our rights so I reached out to his social worker at Washington University. She informed me that he could not be kicked out of the home without 30 days’ notice. She also gave me pretty daunting information letting me know that this is by far the hardest and most challenging part of her job to help placing people with HD in a home.  During this time, she advised that we could file an appeal to keep him in the nursing home, but she had only known one person in all of her years as a social worker that won their appeal. One person, in all of her years as a social worker- I knew then the odds were stacked against us even higher than I could have ever imagined.

She told me that my best bet would be to begin the familiar and heartbreaking process of calling around to see if any homes were accepting any male Medicaid HD patients. When I heard those words, it felt like I was taking a kick to the face because I knew the weight of what this meant. I know how bad the hundreds of ‘no, we cannot help your dad’ felt.  I know the hopelessness that comes from feeling like you are failing someone who means the world to you.  I knew I would be calling for a very long time before we might find someone who would be willing to take him.  Never mind the fact that this removes the luxury of making sure the only place that may say ‘yes’ is really the place you want to send your parent.  All of these thoughts rattled around my head when I heard these words and my heart sank.  What was I going to do? How was I going to get through this, again?

During all of this, my dad was admitted into a full lock down psych ward since the home would not take him back.  He was there because they needed to ensure he was not a danger to himself or anyone else.  After only a short time, it became clear to everyone in the facility that he was none of these things and was perfectly safe.  Before he left the
hospital for the psych ward, the facility had their own social worker present who told me that I could expect him to be in the psych ward for at least six months, maybe longer because he knew how hard it was going to be to find a nursing home that would take an HD patient, let alone a male Medicaid HD patient. When he said those words, I sort of just blacked out- I was completely numb, and all of the questions began running through my head.  What do you mean he will be there this long?  He would be there for Thanksgiving and the holidays?  I couldn’t even acknowledge that thought without having a full blown panic attack.  He is my dad and he has HD, but he is not a monster. The psych ward didn’t have TV in the rooms and you couldn’t even visit them in their room to see where they were staying or how they were living.  You had to lock all your belongings in a locker on the opposite side of the building before entering and you had to be interviewed to make sure you were stable enough to even visit.  It was honestly a place that seemed like a living nightmare to me.  They did take very good care of him while he was there, but that didn’t soothe my anxiety of needing to get him out of there as soon as possible.

If I saw you while any of this was going on, I am sure you noticed that I was deflated.  I had zero of my normal happy, cheerful glee going on.  This was the first time, in a very long time that I felt flat out defeated. I was just in a daze of emotions, broken and crumbled.

However, do not be too sad for me, this is where the story gets better:  In my darkest hour, I had an army show up to help find my dad a new home.  This crew consisted of my best friends, my incredible husband, and my amazing-in- law’s. We began calling nursing homes, and ended up with a mountain of no’s that was piling up so high we could barely see over the mess.  The break in the mess came from my dad’s hospice nurse.  You see, he has been on hospice for two years and they have been such a blessing in so many ways.  They have always acted as an extra set of eyes for me and this time was no exception.  His hospice nurse, who has been personally visiting him for two years, called me to tell me that it was unacceptable for the home to kick him out because he had never shown aggressive tendencies in front of her once.  She informed me that, sadly this is what nursing homes do when they do not want to take care of a person anymore.  During the call, she also gave me the number of a nursing home that she works with on a regular basis that she considers one of the best facilities in the area.  Daily, she gets to witness their level of care and compass for each patient, which far exceeds that of the other homes she works with.

Of course, with experience and the week I had already had, I refused to get excited.  She means well, but I do not want to get my hopes up because I was not sure if she told them about his diagnosis or his situation. But then she tells me that not only HAD she told them about his situation and that he had HD, but they had taken care of HD patients before and they would love to meet him. Again, I refused to let myself get my hopes up, considering how many doors had been slammed in my face thus far, but I took the chance and drove to the home.  His Hospice nurse was not only at the facility, but she was able to tell them that she knew him on personal level and that the accusations being levied against him by the previous nursing home were completely untrue.

This place is a hidden gem in the world of nursing homes.  All of the nurses had been there for a number of years and you could tell they actually enjoyed their jobs.  Unlike nearly every other home, including the one my dad was kicked out of that had a revolving door of people who knew they would not work there next week so they did not care.  The administrator herself had taken care of HD patients and was familiar with the disease.  She also made it clear that she would not want, need, or allow them to send him, or any patient, to the ER all the time to get out of taking care of him.

By the end of the meeting the administrator and I were hugging and crying… Guess what?  They were able to take him. WOW!!!!!!!!!!!!  It is crazy to me; it really feels like this was meant to be.  The whole time in the other home, things kept getting  progressively worse.  From the latest ER visit on, the situation felt like it was spiraling out of control, but I kept telling myself to trust what the universe was trying to tell me and follow its lead.  Maybe he was being mistreated at the previous nursing home and maybe this whole situation got him out of something he was not able to communicate to me was happening.  All I know is that this is obviously happening for a reason.

The best part of all of this is that I got him into the nursing home in only one week’s time and got him there before Thanksgiving!!  I think the best and most important thing to come from all of this occurred about two weeks after my dad had been in the new home.  He told me that he was really happy and he liked it very much.  I am not sure you can understand the significance of those words, but to me, it means that this chaos that was my life, and the life of those around me, for the past few weeks was beyond worth it.  All of the feelings of defeat were not for nothing and I am so happy to be able to see that clearly now because even in that moment of defeat, I knew I had to fight regardless of the outcome.

This entire experience has also renewed my faith in myself.  It has reminded me that because I am fierce, refuse to take no for an answer, and have an army behind me, I got him in a great place and it was nowhere near the expected six month process.  Truthfully, I have no idea how I would have gotten through that, but I cannot and will not dwell on that now.  This all happened so fast, but only because of the help of my best friends, dedicated and loving husband, and in-laws you do not want to mess with!  I am beyond blessed and lucky to work for my in-laws, who made sure I had the time I needed to take care of my dad.  I truly believe that this happened so quickly and was possible because of my army of friends and my in-laws who come together and assemble in full don’t mess with me force!

I wanted to get this post together because I wanted to put out an update on what’s been going on.  Hang tight for my next post that is already in the works to discuss the new life-altering Huntington’s disease research finds!  I cannot wait to update you on  the advancement in the HD world that I am so excited to share!  I’ve dreamed of writing this follow up post for as long as I can remember. Stay tuned!

After the passing of my cousin, I needed some time away to regroup and allow myself to heal, which is something I rarely do.  I love helping people, and I often jump into things head first without considering or addressing my own feelings.

So, after I spoke with Geno’s immediate family and doing what I could to help them with his sudden passing, I realized that I needed to deal with my own feelings of how I am impacted by this disease.

I do my best to find peace in my efforts, knowing that what I do for HD matters, but this loss still cuts so much deeper.

He was only 36. I am 31. Does this mean there is a possibility that I may not make it to 40? Being at risk for a hereditary disease, especially something as horrific as HD, these questions are always in the back of your mind, but they become much more prevalent when someone you love passes.  Especially when that person was taken by the disease.

I do everything humanly possible to avoid going there, down this rabbit hole. But, unfortunately, it is my reality- and some days, I cannot escape it.  With each day that has passed, I have slowly begun to tap into some magical inner strength that has allowed me to keep going. Although, Geno’s sudden passing was enough to send me over the edge, it also happened to be in conjunction with my dad’s rapid decline that is getting progressively worse each month.

As any caregiver knows, there is no break- even when things are really bad and you just need to hit the pause button for a second to catch your breath. In our world, there is no pause button. We know that no matter what life throws at us, no matter how bad it gets, we have to hold it together for our loved one because they are depending on us.

Thankfully, my dad must have known how desperately I needed him recently because we got a couple of great laughs. Seeing his face light up with laughter is indescribable. I think the closest I can come to accurately describing it is a level of pure bliss. There is absolutely nothing in the world like it, and there is no better reward for me, as his caregiver. Even though, he can no longer articulate his appreciation, I know with a giant grin from him I am exactly where I am supposed to be doing exactly what I was put on this Earth to do.   That is my sunshine and rainbow explosion.

In addition to dealing with my feelings, something very close to what I would consider a miracle occurred. I received a message from a local girl, close to my age, who was getting ready to be tested for Huntington’s Disease. While she was researching some information for her family, she came across my blog on a support group where I post my updates. She explained to me that she had never met anyone who had ever dealt with HD before and she wanted to meet.

During our conversations, we both got chills because of the similarities in our stories. It was pretty eerie. After some more conversation, we finally settled on a day and time to meet for dinner.  When we finally met, we both admitted our anxiety about meeting the other person, but ultimately that we were more relieved to talk to someone who truly understood what we have gone through and what we are facing.

This dinner lasted for five hours, all of which we talked nonstop and could have easily talked for another five hours. We parted ways that evening as friends, and met the following week at a support group, which was exactly what we both needed!

Before our official meeting she had already met with the social worker at the Center for Excellence at Washington University and had her blood drawn for the test. The social worker, Stacy was ecstatic that we met and told her I was the best person for her to know through this process. For me, there is no greater compliment, this was pretty much like Gandhi giving me a compliment for being an good human being.  You see, I have been working with Stacy for the 10 years that my dad has been going to Washington University.  I am very active in the studies and I have been in contact with Stacy with questions or concerns so many times over the years that it would be impossible to count. She has been an angel on Earth who has guided me when I was alone with zero help or information. She was there in a time that I could have easily given up, but she made sure that I knew she was just a call or email away. Her guidance through the years is something for which I am eternally grateful. To hear her tell someone that I am the right person to meet gives me such reassurance that all this struggle is worth it.

To have been allowed the chance to connect with someone who knows what I have been through and is facing the same fate is such a rare occurrence. It is not only rare, but it was such a relief. To discuss certain aspects of my life or HD and they just get what you are saying. It was something that I haven’t ever experienced before. But there I was, sitting at dinner with this wonderful person sharing our experiences and we both wholly understood each other. I do not think I was even aware how gratifying that could be and I also do not think I realized how bad I needed that release.

When I began this blog, my ultimate, and what I thought to be completely far-fetched, goal for my blog was to help one person. That was it, one person. I had no idea it would happen so soon or even at all. The girl I met told me that my blog gave her hope, but also a new way to look at a diagnosis. She stated that she knows that now she has an option to live an exciting life and her perspective had been adjusted because she now understands how much more there is to life.  Not only did I help her, she also shared my blog with her husband and her dad, and she said it helped them see through this darkness.

Sometimes in life, we receive hidden blessings and meeting her has been one for me. I did not realize how bad I needed someone who understood. This was just as life altering for me as it was for her.  One of the most important things that I want to do with my time is to show people life can be everything you want it to be if you decide to make it that way.   She even told me seeing how strong I am through all of this shows her that how you live your life really does make a difference. These words show that I have helped someone find their inner strength and I can barely put into words how that makes me feel, I am beyond cloud 9. What seemed to be an unattainable goal has been met, but little did I know how it was going to make such a significant impact on me…. but I am definitely not stopping here.

Sometimes, when reflecting, I consider why things happen at certain times in our lives. This came to me in a time where I was struggling dearly to find meaning. For whatever reason, it was sent to me. I am grateful because I have been resurrected. I am back and better than ever with that internal fire that is burning bright! Life is such a blessing in so many random ways, open your heart and let them in.