Acceptance

This week Matt and I talked about a lot of different things.

Accepting this disease has been difficult for him. He said he was 23 when they first suspected he had MS and how he wishes he had paid more attention to what the doctors said then. But he said “I was young and thought I was invincible.”  When Matt was 16 he had a really bad concussion from playing football and it wasn’t until He and Cindy had infertility issues that he saw an endocrinologist. The doctors think that the concussion caused his pituitary gland "to snap." With the help of the doctors, obviously they fixed the infertility problems! He thinks it (the concussion)all played a part in his illness, and damage to his brain. He said the disease didn’t really start to hit him until he was 47. (He’s 53 now) I asked him what he misses most about what he could do before and he said “Walk”, “I really miss that."  He said it’s so hard for him to go places and “get around” and “I have to go to the bathroom a lot and knowing where a restroom is”…." sometimes it’s just easier to stay home”. 
He told me again of how quickly the disease can change things and how “the reality just hits you.” 
The struggle is real. “Learn what you can, while you can” he told me, because "you don’t always have the time you think you will. “ 
We talked about how young our dad was when he passed, he was 55. I asked Matt about his Faith and if he believed that God was still there for him and he said “Oh Yeah”. 
He said he’s not ready to meet God yet, but he knows his own death is inevitable. 
Matt said he’s so grateful for his large family, because we look out for one another and having a big family is “really cool.”  Family history is so important and he’s thankful for our sister Dorene who traces those family roots and documents things. “That’s why it’s important to listen to older people, because they’ve been there." He said “we just don’t think to ask questions.” We think there will always be time, but there will not always be time.  It’s hard to believe we are becoming those older people now, leaving our legacy to our children.  After our mom died, I found where she had started her own autobiography and hearing her memories in her own words, was a gift that she left us - but how much better it would have been to have those conversations with her. We talked about our mother and he said how he wishes he could have “just one more day to talk to her”, and how much he loved her and missed her and that we grew up in “great times.”
That is why Matt likes this blog, to talk and remember and hopefully impart some knowledge and wisdom to his children.  “I’ve been in their shoes, I know exactly what they are going through.”  He also said that he would “never tell them anything to hurt them, I really just want to help.”  

We talked about things like technology, the technology we’ve seen change in our lifetime….think of what our parents saw! Matt remember his first cell phone was so big, in a bag and he thought he was “so cool”.  Remember the VCR - you know those old VHS Tapes? Yeah, we remember the first VCR we had and how in AWE our dad was. “Oh man”, Matt said… “He didn’t even know how to use it.”  Remember the old TV Antenna? Matt talked about how dad got that so he could get better reception to watch sports on TV. (Hmmm….guess THAT runs in the family after all) Heck, I remember when we got cable and had a remote…before that Matt and Todd would yell for me to come and change the channel, even if I wasn’t in the living room! (See Cindy, that remote thing goes way back….)  
When we are young, we think we’ll always be young, but life has a way of happening and we age and with that comes all of the things this game of life throws at you.  Matt’s big curveball in life has been MS, and “MS SUCKS” he said. “I love diet pepsi, but now I can’t even open the can and I spill it all over, it’s just so frustrating.” He reiterated that it’s so important to do your exercises and how he wished he had done more when he was younger. 

You can’t dwell on the past and what was, you have to deal with the here and now and he knows that.  He’s accepted he is where he is in life, in the progression of his disease and he just wants to tell his story and thoughts. As long as Matt has a story to tell, I will listen and share.  I’ve always looked up to my big brother and I always will! 

Matt enjoys all of the comments very much! He also is super excited about the MS Walk that is coming up on May 7.  We have over 20 people signed up for “Team O”! If you can join us that day please do! Sign up HERE.  If you can’t walk and want to donate to help find a cure for this disease…every little bit helps! 

Our Facebook Group also gives a place to leave a message that we can read to Matt as some people had trouble commenting on the blog. Click Here to Join. 

We are also hosting a coffee hour at church on March 20 after worship service and Matt will be there for a real live “Chat with Matt”!  March is MS awareness month and “Team O” will be on hand to serve donuts, coffee and conversation! Congregational UCC in Castalia, OH. Worship at 10 a.m., Coffee Hour following (Around 11 a.m.)

Thank you for being a friend…..

This week Matt wanted to take some time to thank people for their support and encouragement.
This blog has really meant a lot to him and the comments are so encouraging!!

He told me he really wanted to thank Ford Motor Company and the UAW for all they did for him.
The support through the process of medically retiring, and “just keeping everything straight."
He enjoyed his career at Ford very much. Matt is a journeyman plumber/pipefitter.  When the disease got to the point he could no longer work, he received a lot of support from his coworkers and management an he is truly grateful!

He also wanted to thank all the medical professionals, Dr. Kuns locally and Dr. Boissey at the Cleveland Clinic Mellen Center. He said “She’s a peach” and he would like for me to meet her some day. (I would like that too!)  He really has enjoys his therapists from Firelands also and told me “They are all pretty cool.” This week while he was having therapy he called me and put his therapist Aleta on the phone so I could tell her how to get to the blog.  (Did I mention how proud he is of this???) He said Courtney and Michelle are pretty cool too, and he reminded me again “Do your exercises!”

Matt said he can’t say enough how much his family means to him. He said he could never do it without their support. His kids are starting to fly the coop so there is only Julia at home now with him and Cindy but he appreciates ALL they all do for him.

He looks forward to visits and dinner with his sisters and he likes catching up with his brothers on the phone and hearing about Paul’s latest visits around the country.  (Promoting his books.)

Matt said he loves to talk to people and he’d love to hear from anyone if they’d like to stop and visit you can leave a message here or leave a message for Cindy or Kellie.  (email kelliekenniston@yahoo.com) Matt said he’d love to talk to anyone else with MS that may be going through the same thing (or similar)!  He just wants people to know what he’s been through!

He is also looking forward to the MS Walk and excited to hear about people joining Team O!
You can do that HERE.   Just click “Join Team O” and if you don’t want to fundraise, (you can over ride the monetary amount to $0) it is NOT mandatory. We want to raise awareness!  

Don’t forget about our Facebook Group …. just click “Join Group”- we read comments to him and he calls me to see if there is “anything new”!

We will have some more blogs coming up and I personally want to thank everyone for the support.  It absolutely brightens his day and to be honest it’s been great for me to do something for my brother who has ALWAYS been there for me.  If you have a story about Matt O. from when you were either in school, work, or just knew each other….please feel free to share!

In the blink of an eye….

Let me start by inviting everyone to join TEAM O in the fight to cure MS!
We have a team formed and are walking in the MS Walk on Saturday May 7th, in Sandusky, Ohio.
Join, walk with us, or donate to find a cure! (No amount is too small!) 
Click HERE to learn more 

You don’t have to, but if you’d like to order a shirt you can do so HERE

Even a portion of the t-shirt sales go to MS research.

Last link….If you want to follow A Chat with Matt on Facebook, we have a group formed HERE
Just click “Join Group” and we will add you!

Now on to the blog…..

Matt wanted to talk about how fast things change….in the blink of an eye….
I asked him what he meant by that and he said he thinks about the last MS Walk we did, he was walking then.  It has been almost 5 years since we did that walk.  
Matt appreciates your support, whether it is in person or in thought. 

Pictured below is Team O. in 2011 when we walked!

“I was walking then, but now I'm practically bed-ridden, I want people to know how quickly things can change.” 

He said “I do my exercises now, but I wish I would have done more back then.”

He said “I can’t do much of anything any more.” He went on to say he knows he’s not the man he used to be, but he sure wants to be.

Matt said the more he thinks about it, it gets depressing so he tries not to dwell on it.

Time passes and things change, and he doesn’t know what the future holds but he doesn’t want anyone (medical professionals) to sugar coat it, he wants to know what will happen to him. He said he wants to be prepared and he wants his family to be prepared.

I found this quote and it is pretty accurate to what Matt O. is feeling right now.

Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends."― Joan Didion

It’s not easy living with MS, it is different for everyone. Matt doesn’t want your sympathy, he wants your support, your friendship, your empathy. He wants you to know that he didn’t ask for this and more than anything he’d like to get up tomorrow morning and go to work, driving his own truck and not relying on anyone to get him anything.  He is grateful for his family for being there for him. He knows it’s not easy on them either. 

Matt said "Thank you" to everyone that reads and comments.  He truly truly loves hearing from you all! 

“When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else.” – Iyanla Vanzant

Writing this blog has been something that I look forward to doing and it makes my heart feel good when Matt calls and asks when we’re going to talk about the next one!  He tells me what he wants to talk about, although he said “You can say whatever you want”….this is his time to share his thoughts! 

Until next time…..

Things you don’t think about when you’re young and healthy…..

Let me start by thanking everyone that read and commented on our first blog post.

To say that Matt was excited would be an understatement. He truly loved hearing the comments.  I personally was overwhelmed by the show of love and support. Thank you!

I have started a Facebook Group that you can join and leave comments there and I know Cindy will read them to him! He called me every day to see if there were any more comments.  You can join the group here:

https://www.facebook.com/groups/526487324195513/

You can change the notifications settings there also.  This will make it easier for some people to comment, but for those without Facebook to still follow the blog. 

Pictured below is Matt in the middle of part of our crazy family on Christmas Day-

Trying out my new selfie stick.

Surrounded by the love of family! 

Matt wanted me to talk about the things you don’t think about when you’re young and healthy. After all, you don’t know what you don’t know, and he doesn’t want people to take those things for granted! 

Using a Phone: Yes Matt’s phone is voice activated and he can tell it to call someone, but it’s a flip phone and his finger dexterity makes it hard to open sometimes.  

He can’t really see to use a smart phone, because of his vision.  (Not very smart now is it?) What we need is a smarter phone!  Maybe there is something out there already, a phone that he could easily open- and be voice activated - that’s something to look into further (or invent)!

Exercise!: Matt said listen to the doctor because “they won’t make you do anything to hurt you”, and he said when he does his exercises he does notice a difference and it helps him through the day.  He gets a lot of numbness in his hands and feet - prickly, like when your foot falls asleep — only it doesn’t go away and he can’t control it.  He said the exercises help with that but it never really goes away and every few weeks he has a spell where it gets worse.  He said “Just do what you can, that’s all you really can do” and I added and sometimes you have to do what you can even if you don’t really want to.

And most importantly “Take care of yourself when you are young”, you don’t know when you won’t be able to do a simple thing- like walk.

Read: Loss of vision was one of the first symptoms Matt had. MS affects the optic nerve. 

Matt said he can eventually focus on something in close range if he looks at it long enough; but it takes a long time.  He also said he has a lot of double vision and it makes it hard to watch tv so he “just listens.”  He can’t read anything any more because it’s too small and he can’t get it in focus. He said just sitting and talking to me, he could see me really well, but a few feet further away, he couldn’t make out who it was.  I told him I once heard on a talk show that if you put vaseline on goggles and tried to see through them, that is what it’s like for someone with MS to see like. I asked him if that was accurate and he said it was. Read, because you don’t know how much you’ll miss it. Not just reading words, but music too, and if you never heard Matt sing….you’re missing a real treat! Along with retiring from work, he retired from the church choir because he couldn’t read the music.  He still knows a lot of words to songs and he still sings in church when he hears a familiar song - and he still has that beautiful voice!

Independence: When you are young you don’t think much about hopping up off the couch and going outside on a beautiful day. Matt said he “loves to sit outside or in the garage.”

He knows that he can’t do that without assistance because of the risk of his falling. 

He’s already broken a hip and an ankle after a fall. (Both required surgery and extended hospital stays) Not that this is the time of year to sit outside, but it’s one of the things he likes doing.  He said “you don’t think about that when you’re young and healthy.”

Navigation: You don’t notice how many places are NOT handicap accessible until you travel around in a wheelchair. Matt said it’s hard and he thinks of “all the bathrooms I remodeled, but didn’t think about a wheelchair.”  

(I notice in my own house how we’re not really handicap accessible)  

You can add things like ramps, but in an older house, an older bathroom- it just wasn’t set up to make room for a wheelchair! 

Parking in a handicap spot too, Matt said sometimes even a handicap spot doesn’t leave enough room for Cindy to navigate, let alone enough room to get him in and out of.

"Things you don’t think about when you’re young and healthy……”

As I sit and type this, I think of the impact Matt has had on my life. When I was in junior high he told me to go out for student council and I did and I was voted in!  In high school he told me to join Youth In Government and I did, it was one of the best experiences of my life. (I’m not sure they even do that any more, but it was a great program where the students ran the government for the weekend at the State house in Columbus.) He didn’t know it (or maybe he did) but he helped to develop the leader in me.  I wanted to be like him. He was so well liked, so popular and really paved the way for me. Now he did things to embarrass me too, like when I was in the 7th grade and I had an extremely huge crush on an older boy. At the basketball games they used to rope off the court between games and at half time, he was holding the rope and I was walking by at the same time this guy was. Matt stopped me and the boy and he said “Hey, This is my little sister, Kellie” and while I wanted to crawl under the floor from embarrassment, I was excited at the same time. Always looking out for his little sister. (Yet he made me ride the bus because it wasn’t cool to drive his little sister to school….) We were young and carefree and never in a million years would we have thought we’d be talking about things like navigating in a wheelchair or me typing a blog because he couldn’t see to do it any longer.  Matt is a great guy, trapped inside his own body now and I am honored to share his stories with you all.