So, we’re almost to June 3rd and the second annual ALS 12 Hour Trail Race will be happening again. Now that this is the second time I’ve put together a race, it did seem a little easier. Leading up to this year’s race has been something of a challenge though.
I’ve been contemplating on writing a blog and reviewing the end of 2016. Part of me wanted to let people know what had happened, but then is it anyone’s business outside of my immediate family? I also don’t want to write this for any type of sympathy, but it did affect my running and I figure I can sort of highlight the big points.
As some know, Anne, my significate other, paramour, partner in crime, inamorata, girlfriend etc...., brother had passed in February of 2016. Her father Bill’s health started to fail shortly after that I’m sure as a result of burying one of his sons. So, with 2016 starting out on a downward slope, it didn’t get better for our family at the end of the year either.
Anne’s father, who was bigger than life and probably the most well-known person in Brockport, accepted me into the family without question. He had such a great sense of humor and I would joke with him all the time. Even at times Anne may have felt the joke was a little too off color, he would laugh and think it was a good one. He would ask my opinion on things and I would always ask for his. He never asked for help, but always showed so much appreciation when you would do something for him. When he was able, he would come over and mow our lawn. Drop off batteries, because you always need to have batteries. Buy Anne windshield wiper fluid and a new snow brush every year. He would make sure you had light bulbs. We still have light bulbs and will for years. Later into 2016 he couldn’t do as much around his house as he used to, so I tried to help where I could and just do things before it would be brought up. He didn’t want to ask, so you had to just see what needed to be done and do it. Click here to read more on William Connors.
As you can see the way this is being written, Anne’s father passed also. It was the end of October when his health really started to fail and he was brought to the hospital. The first night Anne and I stayed in the Hospital with him. Taking turns staying in the room and sleeping in chairs in the family room on the same floor.
After we were relieved by another family member in the morning, we both went home and slept for a couple more hours. We both got up around 11:00 am and cleaned up. Anne received a phone call that she was needed back at the hospital. I told her I would stay home and get some stuff done around the house and I would be up later.
This is where things start to get interesting. As I’m sitting on the thrown (you all know what the thrown is, right), my right arm goes numb. It’s funny now, but at the time it wasn’t. So, I’m trying to wipe and I’m right handed. I can’t move my arm but I’m still trying to wipe. My arm is dead and just hanging there and I’m trying to swing my arm toward my ass so I can clean up. Weirdest feeling I’ve ever had. I finish up with my left hand and get up. I look at myself in the mirror and I’m trying to figure out what the hell is going on. Well maybe this will pass. It’s nothing. Shit, I’m home alone! Is this a stroke? Is this a JOKE? All this is going through my head as I look at myself in the mirror and try and see if life has returned to my right arm. Screw this, call 9-1-1.
As I’m on the phone with the 9-1-1 operator, I tell her I think I’m having a stroke. She asks a bunch of question about how I’m feeling. She tells me to go sit and wait for the ambulance. Ha, that’s funny, I’m still naked. So, while I’m on the phone I try and get dressed without the operator knowing what I’m doing, because she told me to sit and wait. Thank God for loose sweat pants. I get sweats on, grab my wallet and keys, open the front door and sit on the couch.
Brockport Police arrived first. Ends up being the son of a friend of mine that I went through the Police Academy with many years ago. We talk for a bit while waiting for the ambulance. The ambulance arrives and they get me loaded up. By this time, Anne has text me asking when I’ll be up to the hospital. I text back telling her soon, but I’m coming by ambulance. I’m not sure if she thought I was joking, or what, but I told her I’m coming to that hospital.
When I get to the hospital I hear Anne asking the ambulance medic, who is in the back of the ambulance? He tells her he cannot give her that information. Anne opens the door and yells at me that I better not die or she’ll kill me. Understandably, she is a little upset. I tell her it will be ok and she goes back up to her father’s floor.
Man, tell hospital staff you’re having a stroke and you get some good service. I wasn’t left alone for more than a minute and I was getting CAT Scans and MRI’s faster than you can shake a stick at. They inform me I had three strokes on the left side of my brain and they found evidence of a stroke on the right. I don’t recall any type of symptoms in the past, but there is the proof.
Within an hour, I’m being admitted and up to a room. At the time they are wheeling me up, Anne came down to check on me. When she asks for me she is told I have been transferred up to the 7th floor. She tells them, no that is where her father is being transferred. She is looking for me. They tell her again, Steve is going to a room on the 7th floor. When I get wheeled down the hall on the 7th floor there is Anne, and I’m pretty much thinking she’s upset. Either because I’m being admitted or she wants to kill me and on top of that, her father is being put into hospice at the same time. She tells me her dad is also on his way up to the 7th floor. I ask the nurse if it’s possible to put our rooms next to each other and they accommodate us.
So, I’m strapped up to a heart monitor, but get to walk around so I’m able to visit Bill.
For the next couple days, I have numerous tests run trying to figure out what happened to me. There’s also Anne’s entire family up visiting Bill. Everyone who lives out of town arrived and they would pop their head into my room and just give me a look, like WTF.
They find a hole in my heart, yea I know make your jokes, which isn’t a big deal. Everyone is born with it, but it usually heals up. Mine apparently didn’t. It could be a factor with the strokes I’m told. At the end, they believe I may have Afib (atrial fibrillation). That’s when stroke risk increases because the rapid heartbeat allows blood to pool in the heart, which can cause clots to form and travel to the brain. I’m put on medication and after three days I’m discharged. This was a Tuesday. Bill passed the next day, October 26, 2016.
The beginning of 2016 sucked and it pretty much finished up sucking.
Death sucks no matter why it occurred. From a heart attack, to ALS, and even a broken heart, it all sucks ass. In some cases, the one who makes out the best is the one who died. No more suffering, no more pain, no more worry. We continue to miss them. Feel the emptiness in our hearts and thinking of them constantly. My father died over five years ago and I miss him and think of him everyday.
After I was home I made my call to Fernando Vieira at ALS TDI asking if there is any connection between strokes and ALS. He informed me, none that he is aware of. Whew!!
A few weeks later I agree to have a heart loop monitor implanted in my chest. This will monitor my heart and see if I really do have Afib. If it is discovered I have Afib, I would be put on a blood thinner. I’m also having blood work done constantly. With strokes, about three months later you develop depression. BINGO, they nailed that one.
I continue getting blood work done, going to the Stroke Center and still waiting to find out what caused my strokes. About two months ago my blood work had been coming back consistently screwed up. My Neurologist tells me, I have Antiphospholipid syndrome (APS), sometimes known as Hughes syndrome, it is a disorder of the immune system that causes an increased risk of blood clots. Yay, I’m officially diagnosed and will be on medication the rest of my life. I get to have blood work done weekly and hope that someday we can stretch that out to monthly. With this diagnoses I am put on a blood thinner. The same medication I would have been put on if I had Afib. Can I return the machine in my bedroom and stop paying that copay now????
I end up having the heart loop monitor removed. That was harder than when it went in. I returned the equipment that downloaded and sent the heart information to my doctor and can stop that copayment every month.
All of this, death, health, depression and the total lack of really wanting to do anything during this past crappy winter, I didn’t run. Still haven’t run. Maybe a couple runs here and there. I hope to get the motivation soon especially since the weather is turning around.
Don’t get me wrong, a lot of good things happened last year too. This was just bringing people up to speed with some things I haven’t really shared and wasn’t sure if I was going to share.
Almost half way through 2017 and besides the weather, it looks pretty good. We’ll find out how it panned out in six more months.
In other news from De-Feet ALS, we are in the planning phase of an event that should be fun for all. At least the 21 and over crowd. I’m still working on details, but we’re looking at the Fall or Winter. When the event gets closer and the details with all involved are settled, we will be making an announcement.
I hope to see a lot of people at the race in Northampton Park on June 3rd. Even if you can’t or don’t run, stop out and say hi. It is actually a fun time even if you’re not running.